Part II - The Right to Science, Now

6 On the Right to Science As a Cultural Human Right

Farida Shaheed and Andrew Mazibrada *

6.1 Introduction

What is science, and what role should it play in the future mediation of our global society? Any discussion of the human right to science ought to begin by trying to answer those two foundational questions. As counterintuitive as it may seem in an age dominated by technology, consensus on how those questions might be answered has thus far proved elusive. More difficult still is elucidating the position of science within a framework of human rights.

It may seem strange at first to talk of science as mediation. Yet science pervades complex societal spaces in areas beyond innovation, technology, and access to their benefits. Science and culture intertwine and overlap, and contribute symbiotically to intellectual creativity and expression in complicated ways. These are best framed and analysed as mediations of complex, bidirectional relationships. This, we believe, offers more invaluable insights into the future role of science in our society.

6.2 Science As Global Knowledge and a Public Good

Several core themes must be appreciated before these questions can be addressed in the modern context, as global interconnectedness, human rights, and cultures have evolved in tandem with science and technology.

Science and culture are symbiotic. Freedom to engage in creativity is central to both and, perhaps more importantly, each informs and shapes the other in crucial ways. General Comment 25, published in April 2020, reinforces this view:

Cultural life is an “inclusive concept encompassing all manifestations of human existence.” Cultural life is therefore larger than science as it includes other aspects of human existence; it is however reasonable to include scientific activity in cultural life. Thus, the right of everyone to take part in cultural life includes the right of every person to take part in scientific progress and in decisions concerning its direction.¹

The indelible relationship between science and culture is also reflected in the intentions of the drafters of the Universal Declaration on Human Rights (UDHR). There was, at the time of its drafting shortly after World War II, an intention to promote universal access to both science and culture. Lea Bishop, to whom scholarship in this area owes a great debt, has also suggested that, when the UDHR was being signed, the United Nations had come to envisage the sharing of scientific and cultural knowledge as something that could unite an international community.² It would be a “task in common” that would bring people together, uniting them with a common journey of discovery. This would, in turn, help “promote cross-cultural understandings” and “yield a more secure world.”³ Understanding science as contributing to knowledge is holistic. Knowledge production is the intellectual and creative activity of engaging with the world around us, which necessitates translating the product of that activity into different forms, only one of which is what we traditionally see as science. Others include art, literature, philosophy, and the social sciences.

For this collaborative intent to truly succeed, knowledge must itself be seen as a public good, there to be shared across the world without exception.

It is not just a question of having access to what people produce, but to the whole process of creativity. It is the ability to fully explore the whole of one’s own potential in all its diverse aspects, to benefit from the creativity of others, and the protection of the moral and material interests that result – as the Covenant stipulates, those which emanate from any scientific, literary, or artistic production.

6.3 Participation in Science, Culture, and Rights Discourses

Human development is about participation, necessitating freedom to fully and actively contribute, and the right to science must also be interpreted from that perspective.⁴ It cannot be just about access to the benefits, or the products, of scientific advances. Discourses about access to science are too often framed as exclusively concerning access to the end product, whether an idea or invention. Access also includes the participation of people affected by science, meaning everyone worldwide, as confirmed in General Comment 25.⁵

Participation includes the freedom to experiment and fully explore one’s own creative potential, and informed engagement in the political decision-making processes concerning research prioritization. Participation in ethically significant and politically polarized areas and contexts, such as artificial intelligence and the modification of the human germline, raise several tensions and necessitate a reconceptualization of science’s role in modern society. That role cannot be understood outside a cultural context.

One way of conceptualizing the influence science has on rights is through the emerging technologies it has created, and more specifically through of the problem of meaningful consent. This allows us to understand the role science will play in global society in several linked ways. Firstly, in scientific research, consent is the ethical ground zero. This fundamental principle sheds light on two related tensions explored in this chapter. The first concerns the tensions between publicly and privately funded research. The second considers what makes consent meaningful and explores what that means beyond the research context, into the application of such research.

Facebook has conducted at least two now well-known experiments in social manipulation.⁶ No consent was obtained from participants in advance. Public outrage seemed not to deter Facebook at all. The second study, published in a prestigious scientific journal, the Proceedings of the National Academy of Sciences (PNAS), “manipulated the extent to which [689,003] people … were exposed to emotional expressions in their News Feed.”⁷ Most interesting, however, was the debate between scientific professionals about the role of consent. On July 3, 2014, Inder M. Verma, the then PNAS editor-in-chief, published an “Editorial Note of Concern” responding to concerns “raised about the principles of informed consent and opportunity to opt out in connection with the research in this paper,” and defending publication.⁸

A central issue in ethical discourses concerning emerging technology, and information and communication technology (ICT) in particular, regards Big Data: the collection, storage, and analyses of massive databases. The issue of consent is complex and extends beyond scientific research to use of the resulting products, for example in the Terms of Service offered to users of Internet platforms. Recent research demonstrates that reading all the agreements attached to the various applications we regularly use would take something in the order of weeks.⁹ Nevertheless, we just click and go on. There is no interaction and certainly we are not informed in any meaningful way. There are few alternatives: in a recent US Supreme Court case, the view was expressed that foreclosing “access to social media altogether is to prevent the user from engaging in the legitimate exercise of [free speech] rights.”¹⁰

The lack of genuine consent is of concern where platforms extract user data and then profile those users for marketing and manipulation.¹¹ They do so in a way that is opaque, not clearly understood, and unaccountable to a democratically elected body.¹² Users are simply not aware of how much data is being collected from their use of these technologies and to what use it has been or will be put. The long-term effects on the well-being of both individuals and communities is unknown to us, but is likely to be considerable. It will reshape cultures in an undemocratic way.

6.4 Data Neutrality

There are frameworks that address the way commercial entities should act in such circumstances: the UN Guiding Principles on Business and Human Rights,¹³ for instance, or the Montréal Declaration on the Responsible Use of Artificial Intelligence.¹⁴ These are areas in which UN Special rapporteurs are particularly active, drafting instruments and advice for the governing of that surveillance in order to protect our rights to free speech and privacy.¹⁵ However, governing these sprawling, global commercial entities is challenging not only because of the transnational nature of their use and influence, but also because many are US-based organizations.

There is particular emphasis in the US context on protecting free speech and the free market, sometimes at the expense of protecting individual and collective rights.¹⁶ These technologies and their derivatives, that is, AI and Big Data algorithms, demonstrate that science is fundamentally intertwined with culture and directly impacts how culture evolves. This has significant implications for the right to science and its relationship with other rights.

From a privacy perspective, for example, seeking the deletion of such data is challenging. Europe has recently adopted a different approach to the USA under the GDPR.¹⁷ However, there is little consensus among scholars as to whether GDPR will be effective.¹⁸ We are faced with tools for our everyday lives that develop so rapidly that governance structures and legislative measures cannot hope to keep up. Fines imposed under regimes like GDPR are easily written off, for example as tax deductible expenses. To huge, wealthy platforms, such fines are merely another cost of doing business. This US emphasis on innovation highlights the tension between access to the benefits of science and its advancements, and intellectual property rights and innovation. There is a balance to be struck between these elements, but it must not be at the expense of other rights or natural justice.

There’s a tendency to presume that data is neutral. It is not. Algorithms predict based on incomplete data in all kinds of areas, and their use will likely increase with time. There is wide consensus among scholars that this will exacerbate existing problems of discrimination.¹⁹ This manifests in several ways. Firstly, those currently at the margins of society are also the furthest from access to such technology, exacerbating their inequality. Secondly, algorithms reflect the biases of their creators and training data: their use may further perpetuate societal biases in opaque ways. Further, exclusion leads to skewed or value-laden data.²⁰ For instance, if marginalized communities are excluded in some way or another from using various technologies, their data cannot be considered by the algorithms that otherwise govern them. People in authoritarian countries will experience this effect even more dramatically. Dissidents whose voices are violently silenced will have no place in this collected mega data, and it is voices like these, diverse and independent voices, whose data would reflect the true texture of the world we inhabit. Often it is in the margins where change begins, where debate and insight are catalysts for new awareness. There is, for instance, widely expressed concern regarding increased surveillance through smartphone technology as a consequence of the global emergency engendered by the COVID-19 pandemic and the state of that surveillance once the state of emergency has ended.²¹

There is, we suggest, no such thing as neutral data just as there is no such thing as neutral research. When investigative research parameters are set out, and questions framed, there is often a way of thinking about assumptions that can combine inherent and often subconscious prejudices. Culture and ideology affects the conduct even of good science. It is worth recalling General Comment 25: the expression, “to enjoy the benefits of scientific progress” is “not restricted to the material benefits or products of scientific advancement, but includes the development of the critical mind.”²²

In 2012, during the process of researching the special rapporteur’s report for the UN on the right to science, the need of mobile phones for migrant women workers had become critical. For migrant workers to lose access to their phones – because they were taken from them by their employers – while alone and in unfamiliar parts of the world, in regions and cultures that might be alien to them, meant stripping them of access to any kind of support system. But now we see that telephones, in particular smart phones, also expose them to new kinds of risks – surveillance by private actors and by states, for different but no less potentially damaging reasons. There must always be a balance in terms of who has access to and use of such data, what it is ultimately used for, and what kind of informed consent has been obtained for those uses. Access must not be limited by income or background, and a realistic degree of privacy must always accompany access. When governments and organizations formulate policies and plans of data collection and use, we must acknowledge that it is potentially skewed in unpredictable ways and we must protect those who might be excluded or prejudiced as a consequence.

At a recent meeting on children’s rights in the digital world, as part of the UN Committee on the Rights of the Child’s endeavor to draft a General Comment, it was noted that the young see no difference between their online and offline lives. To them, it is simply one life. The UN takes the view that all the rights enjoyed offline, in the physical world, should also be enjoyed online, in cyberspace. That, we know, is not currently the reality. How we move from simply saying it should be this way, to ensuring those rights can be enjoyed in cyberspace, is one of the core challenges facing human rights in the digital era.

This raises an interesting question. For the moment, we can set scientific knowledge to one side and simply ask, what do we mean when we say “knowledge”? We live in a world where many young people believe that the only valid source of information and knowledge is mediated by ICT. But not all information of value is to be found online. This framing raises a key question on the nature of knowledge itself: Who populates knowledge? In developed states in the Global North, it is easy to forget that not everyone worldwide has the same access to ICT. Even in the digital age, we all contribute to what we consider our vast reservoir of knowledge, but not everyone does so in the same way. What we consider to be “knowledge” is distorted by the gap between those who have access to ICT, to digital means of populating knowledge, and those who do not. This affects how we define who is able to participate in the production of knowledge. Language is another example of how the Global North biases this framing of what constitutes knowledge. It plays a substantial role in who can actually access, contribute to, and therefore participate in knowledge production. It doesn’t matter how advanced a community’s ICT technology is, if a community is unable to communicate in the right languages, very often English, it will not be able to access and participate in knowledge production, or share their own knowledge. In time, artificial intelligence may contribute solutions to this problem by offering translation affordances, but we must not allow participation in, access to, and production of knowledge to be delayed while we wait.

To take this one stage further, knowledge access, production, and participation cannot become monopolized as a consequence of information technology architecture. Regulation and governance structures to avoid the kind of monopolistic practices we are seeing with major Internet platforms and ICT companies must be explored. This inevitably involves an interdisciplinary approach, utilizing tools from other disciplines outside of international human rights law, such as antitrust and competition law. It means reconceptualizing governance structures and approaches that can react more quickly to changes in the landscape of the digital world than can international human rights law. It means, we believe, integrating the norms of international human rights law into governance and regulation structures that do not necessarily need to rely on courts to ensure compliance with States’ obligations and duties. Here again we see the inexorable convergence of science with culture, and of the right to science with cultural rights. This is the value of the initiation of the commons era of knowledge, of “open source,” where anyone can contribute and make access open to all kinds of knowledge production and participation.

6.5 The Tensions between Publicly Funded and Privately Funded Research

Part of this monopoly-based concern centers on scientific research, and research in general, in public institutions that is being increasingly driven by private sector funding. This channeling of scientific interrogation in certain directions is deeply instrumentalist. And as public funding is regularly reduced across the board, even in Europe and wealthy industrialized states, funding for pure research is decreasing.

There is a perception that research must be focused on a product, the need for something tangible at its conclusion, rather than simply the advancement of scholarship and knowledge. This is especially the case when such research is privately funded. Consequently there is little space for purely theoretical research. So much of our early scientific research, whether in the natural and physical sciences, or the social, economic, and political sciences and philosophy, focused on thinking theoretically about the world and the universe it inhabits. There was no demand for a product at the end of that process. Now, the market drives the areas into which research is able to go, and how it explores those areas. It leaves little room for serendipity and, we believe, stifles the very creativity it seeks to foster.

Scientists conducting research are concerned with negotiating patents for whatever it is that they have, before publishing and making their research available to others. The importance of these issues was highlighted in the two 2015 follow-up reports to the UN the right to science, on Patent policy and the right to science and culture,²³ and on Copyright policy and the right to science and culture²⁴ and has taken on an even greater significance since. Access to the most prestigious scientific journals can be very difficult. Here, the digital age affords great potential for the sharing of knowledge, and for working with published scientific research. However, the essence of scientific work cannot be usurped by commercial incentives, or hindered by the need to copyright that work before sharing it and inviting its analysis. The core idea of science is that other researchers should be able to freely access, and thereby replicate, test and, if necessary, refute, the theories advanced. This is a process of thinking that requires onward momentum. We know that scientific hypotheses are not intended to be permanent, but should be continually tested. We must be able to communicate freely with each other to share new ideas. Intellectual property ideals cannot hinder that process. Framing the right to science in terms of cultural rights lends that notion added weight.

The other side of the public/private dynamic concerns work carried out in the public sector, but which is then transferred to the private sector. In this, we refer to public sector institutions receiving public funding for research that, on completion, leads to a product or outcome that profits the private sector.

The 2012 report to the UN on scientific progress and its applications and subsequent reports related to intellectual property laws²⁵ were not received without comment, some of it strongly in opposition. The strongest opposition, unsurprisingly, came from highly developed countries and from country representatives in the World Intellectual Property Organization (WIPO). There were expressions of genuine concern about the unrest the report had created.²⁶ This highlights a problem of background: the attendees at conferences and symposiums involving commercially or business oriented organizations like the World Trade Organization (WTO) and WIPO have dramatically different perspectives to those attending similar events focused on human rights issues. Private sector companies are rarely seated at tables with human rights scholars and practitioners. The outcome of this division, which has been obvious for some time, is the perception, particularly among scientific practitioners and researchers, that the courts favor market-oriented resolutions rather than those predicated on human rights. There are rare exceptions, of course, where intellectual property rights take a back seat to human rights, both individually but also collectively. Often, however, it is only as a result of public pressure and media attention.²⁷

In the consultations and expert group meetings leading to the drafting of the Copyright and Patent reports, there was little in the way of engagement from the private sector. Only when the discussions concerned food-related rights was interest shown by a few private sector people engaged in the agricultural industry. It is hard to overstate the importance of such a diversity of expert opinion on an issue like food-related rights. The future of scientific research in this area is certainly dominated at present by genetically modified food chains. However, the same could be said of almost any area of emergent technology and scientific research: diversity of engagement is key.

In 2009, the then special rapporteur on the right to food identified the increasing application of intellectual property regimes to plant varieties and seeds as a significant threat to food security, particularly for the poor.²⁸ Intellectual property regimes focus exclusively on the commercial seed system, overlooking farmers’ informal systems. National rules frequently prohibit even small farmers and public institutions from sharing, replanting, and improving seeds covered by patents and plant varieties.²⁹ The “excessive protection of monopoly rights over genetic resources can stifle progress in the name of rewarding it.” Such an approach “undermines the livelihoods of small farmers, traditional and not-for-profit crop innovation systems, agro-biodiversity as a global public good and the planetary food system as a whole.”³⁰ The critical point to recognize is that (at least) two parallel agricultural systems exist, and should continue to exist together and in harmony: the commercial seed system and the farmers’ seeds (landraces) or informal systems.³¹ This is where the biodiversity emerges from.

Farmers working for generations with particular grains, and experts working in food technology, have valuable insight to offer. Wild seeds need to be mixed in with other varieties, for example, and the result then steeped in the chaotic complexity of nature, in order to draw out higher yielding seeds. Intellectual property regimes cause tension in other ways. Some new commercial patented seeds specifically block reproduction so cannot be replanted unless farmers pay again for the technology to release the reproductive part of the seed. Yet, and perhaps ironically, GMO patented seeds could not have been developed without the very same landraces seeds they threaten. Still commercial enterprises bring legal actions against farmers who harvest plants that include their patented seeds even if it is the wind that has carried them to adjacent fields.

Similar experiences can be gleaned from the perspective of indigenous peoples and small, local communities. The Small Island Developing States, for example, particularly those in the Pacific region, who do not consider themselves “indigenous” in the way developed States have tended to label them, possess considerable traditional knowledge, but they hold it communally. In such communities, knowledge is considered a common good. There are no individualized rights of property. When we consider the concept of moral and material interests of the author, for example, they respond that they are the collective authors, and the collective holders, of that knowledge. They are also its stewards and, as such, it is passed down from generation to generation.

Clearly, intellectual property law clashes violently with this normative system because it rejects the notion that such knowledge could be owned by any one individual or corporate entity. However, where such indigenous knowledge has been retained, cultivated, and improved over many generations, and in a way that is directly influenced by and sympathetic to the particular conditions of the region, it often becomes valuable to Global North commercial entities. In a situation where such intellectual property rights are simply unknown to such communities, it is easy to appropriate that knowledge for commercial purposes without the kind of compensation or recognition that would attach to researchers from the developed world doing similar work. Such appropriation has become widespread and is known as biopiracy, or in terms that are less politically charged, bioprospecting.³² The neem tree case,³³ which concluded a decade of litigation in 2005, provides a stark example of traditional knowledge becoming the subject of a prolonged patent battle and the tensions between different normative approaches in patent systems. It also offers a potential way forward to protect traditional knowledge. In the United States, prior knowledge or use which would deny a patent was recognized only if previously published in a printed publication³⁴ – not, for example, if it had been passed down through generations of oral tradition. The European Patent Office (EPO), who had initially granted a patent to develop antifungal products to the US Department of Agriculture and multinational WR Grace in 1995, eventually agreed that the neem had actually been in use in India for a very long time.³⁵ Since that case, India has bought about the cancellation or withdrawal of numerous patent applications relating to traditionally known medicinal formulations. Its Traditional Knowledge Digital Library (TKDL), a database containing millions of pages of formatted information on more than two million medicinal formulations in multiple languages, “bridges the linguistic gap between traditional knowledge expressed in languages such as Sanskrit, Arabic, Persian, Urdu and Tamil, and those used by patent examiners of major IP offices.”³⁶

If unchecked, privately funded research and intellectual property law can act to enclose³⁷ the products of creativity and access to knowledge, whether that research arises out of traditional scientific practices or the exploitation of indigenous or traditional knowledge.³⁸ As General Comment 25 observes:

Local, traditional and indigenous knowledge, especially regarding nature, species (flora, fauna, seeds) and their properties, are precious and has an important role to play in the global scientific dialogue. States must take measures to protect such knowledge, through different means, including special regimes of intellectual property, and measures to secure the ownership and control of this traditional knowledge by local and traditional communities and indigenous peoples.³⁹

6.6 The Importance of Critical Thinking and Human Rights in Knowledge Production

This chapter began by asking what science actually is and what role it should play in mediating our global society. In its concluding paragraphs, we hope to draw the preceding threads together to begin answering those questions. What then is the added value of a human rights approach to this idea of science and its role? Equality is key. A diversity of input is essential. Decolonization of knowledge is fundamental. What science’s role in society should be cannot be answered without reference to who has control over it, who decides what is or is not “scientific” research, and how its best methodologies are determined.

We build an idea of the role science ought to play by drawing on international legal instruments such as General Comments, particularly the CESCR’s General Comment 25, and other UN documents, in particular the 2017 UNESCO Recommendation on Science and Scientific Researchers.⁴⁰ That idea focuses mainly on empirical science, that which can be tested and refuted, but also includes knowledge from diverse sources, including traditional knowledge. It requires that we apply to knowledge a degree of critical thinking. It requires the understanding that such knowledge may one day be proved wrong, or no longer apply, and that this, in itself, is deeply valuable. Even local communities, who have stewarded traditional knowledge from one generation to the next, may benefit from a university or similar institution doing further research. Their own knowledge is then tested and refuted or confirmed, but in either case it is built upon. Traditional knowledge may not be derived from the same rigorous principles as those that govern the practice of scientific research, but it has an important place in our reservoir of knowledge. Such communities may have explanations for phenomena that may at first seem rooted in superstition or ritual but often are based on invaluable lived experimentation. We must accept that the conceptualization of knowledge derives from different perspectives on the world – and that nevertheless each can contribute precious knowledge.

The progress of science and access to its benefits means different things to different groups, cultures, and societies. An understanding of science and what it should do, will be very different for the agricultural industry than it will be for the individual farmer, although they may share concerns about seeds and productivity. It will be more different still for younger people in the digital age, than for those of us who remember a time before information and communication technology, or before the Internet and social media.

We have highlighted the importance of participation in science, whether this relates to participation in research, or to access to the benefits of that research, be it through an end product or the furtherance of future research. But this also includes participation in decision-making about how science ought to contribute to society. Science has the capacity not just to contribute through end products and usages, but also through knowledge and education. It contributes a particular way of critical thinking which is valuable as a methodology for approaching all the vast and sometimes chaotic information we are confronted with in the digital age.⁴¹ As the Committee puts it in General Comment 25: “doing science does not only concern scientific professionals but also includes ‘citizen science’ (ordinary people doing science) and the dissemination of scientific knowledge. State Parties should not only refrain from preventing citizen participation in scientific activities but should actively facilitate it.”

However, in the digital age, as technology progresses at an ever-accelerating pace, expertise has become even more indispensable. It is impossible for ordinary people to be even reasonably cognizant of all the technological advancements taking place at a given moment in their own society, much less be knowledgeable enough to make informed decisions about economic, political, social, and ethical considerations concerning those developments. By definition, there is a necessity, when considering what participation in science actually means, and therefore in the decision-making processes that govern how it mediates our individual and collective societies, to take into account the wide diversity of contributions that individuals in a society are capable of making. We suggest viewing participation as a continuum on which all contributions can be seen, analyzed, and made use of.⁴² Public consultations can be valuable, and are made easier by ICT in the networked, digital age, but the extent to which even a well-educated public can valuably contribute to informed policy and decision-making processes is debatable.⁴³ Yet, to discount such participation would be undemocratic and undermine the political ideologies of most developed States.

6.7 Interdisciplinary Relationships Allow Diversity within Discourses

A further complication exists among even those who are experts in a given field: specialism. Few experts in technology fields are experts in the entirety of that field. Gone are the days when science commentators could usefully comment on the detail of a given scientific or technological discipline. An expert in particle physics may have something useful to say on the generality of artificial intelligence and the ethics of its various applications, but this is quite probably where their contribution would end. That same expert might have even less to say on the issues relating to biomedical research. So, how do we ensure the opportunity for participation from everyone in a meaningful way?

It begins with transparency, and progresses to valuable contributions through education – popular and life-long education about what emergent technologies actually involve and what the ethical debates surrounding their use really mean. Only a small cadre of experts in a given field understand its applications, but even they are not experts in how those applications might impact society in the short, medium, and long terms. It is not only human rights scholars and practitioners who express concern about those in the technology industries dictating how human rights will apply to the myriad applications of their technological innovations – many in the technology industries themselves accept they should not be making those kinds of decisions. One key example is content moderation by Internet platforms. The frameworks applied by the platforms to govern speech on their networks only approximates human rights norms, and very often, given the US-centric approach, is informed only by the First Amendment to the US Constitution, rather than by regional and international human rights instruments and jurisprudence.⁴⁴ A framework already exists, but it is not the framework platforms are using to regulate speech in the principal environment in which speech now takes place.⁴⁵ This conflict cannot continue and can only be resolved through interdisciplinary approaches that necessitate conversations and cooperation between specialists in disparate areas.

Commercial incentives driving innovation, and therefore the practice of scientific research, must not ignore fundamental human rights principles. The right to science necessarily influences and supports in a cross-cutting way the application of science and technology, and discussion of the ethics of both, to many other human rights. Experimentation in the behavioral and neurosciences, for example, where consultation and consent are in issue because a private entity conducts the research rather than one is that is publicly funded and therefore subject to different legal scrutiny, identifies a lacuna that is becoming more pervasive and dangerous. Potential harms ought to be identified and debated, and here again transparency is key. Trade secrets have, for too long, made the products of scientific research opaque and unaccountable. This problem, as we have already identified, is significant in the area of bias in algorithms. Related to this, in the criminal law context, algorithms currently assist law enforcement and courts in ways that are almost entirely opaque and therefore unknowable to the subjects of those investigations and court proceedings.⁴⁶ Independent oversight structured so as to protect trade secrets is possible, but technology innovators resist it. The balance towards commercial interests at the expense of human rights and notions of natural justice and due process has leaned too heavily the wrong way for too long. Commercial entities have greater resources and influence and have used that to unbalance the field in their favor. They are not accountable to the human rights system, nor do they sufficiently participate or engage with it.⁴⁷ In fact, they are beginning to claim false legitimacy from the language of human rights without being properly bound by its norms. This must change.

Another way in which the difficulties inherent in participation as a result of barriers imposed by specialist expertise may be addressed is through the formation of interdisciplinary groups and organizations whose debates and cooperation take advantage of diverse viewpoints and expertise. These can be both formal and informally constituted, but they must include stakeholders for a wide variety of interested, but appropriately qualified groups; from private industry as well as the public sphere. In all of the consultations and meetings preceding the Patent and Copyright reports to the UN in 2015, where anything relevant to intellectual property was to be discussed or that might conceivably have relevant implications, WIPO was present. Yet those representatives from WIPO who attended seemed to be isolated within the wider organization. While they themselves were responsive, their institution did not necessarily speak with a unified voice or a unified narrative. Private law and public law conversations must overlap, particularly those having human rights implications. Here again, culture intersects with science and cultural rights inform how the right to science, and participation in science in all the guises we have discussed, must be interpreted.

In the ICT arena, given the transnational nature of Internet platforms and networked communication and interaction, such interdisciplinary and international collaboration gains greater significance. We have identified a problematic divide between the way human rights have traditionally mediated the relationship between the individual and the State, but not between the individual and private entities. Yet private entities, even those with purely commercial incentives, can and should play an important role in facilitating this relationship. Such actors have changed the appearance of the rights landscape, and human rights thinking will need to adapt as a consequence. Human rights scholars and practitioners must find like-minded allies in the private arena. Until we actually come together in discussions on issues that impact law and policy, it doesn’t matter what guiding principles we may have for businesses. These are not binding instruments, so we must always be keen to have further conversations in order to actually make rights collaboration a reality on the ground. CESCR has said very clearly that the State where an individual is a citizen has responsibilities, duties, and obligations in respect of rights, but that in reality it doesn’t always work that way. Private entities, particularly influential nonstate actors like Internet platforms, actually have, we believe, a part to play in removing lacunae and ensuring compliance with rights.

6.8 Concluding Remarks

It remains to be seen what impact the CESCR’s General Comment 25 will have, but it seems clear it is a stepping stone to something else; the opening of a door to a more complex, nuanced debate and, perhaps, a renewed importance for the right to science, and an evolving role in the protection of other human rights. It highlights, we believe, the need for (1) a broader perspective on the right to science, and (2) concrete mechanisms for giving effect to its core principles outside of human rights law. One clear statement it makes is to emphasize the symbiotic relationship between the right to science and cultural rights. We repeat the following: “Cultural life is an ‘inclusive concept encompassing all manifestations of human existence’ … Thus, the right of everyone to take part in cultural life includes the right of every person to take part in scientific progress and in decisions concerning its direction.”

For the justiciability of the right to science to become a reality, we must recognize that the modern landscape of rights and technology is complex and nuanced, and raises many unknowns. A useful approach might be to pick perhaps one or two discrete areas of concern in order to determine what it is that can really be done and which would allow a certain balance to be achieved, rather than attempting to solve the whole problem at once. Collaboration, as envisaged by the drafters of the UDHR and as required now in the interdisciplinary contexts we believe are necessary, involves steep learning curves for all involved, and a willingness to step out of comfort zones and be vulnerable. All involved will be characterized by their own compulsions and obligations, whether they are representatives of a State’s executive organs and institutions, or human rights practitioners and scholars, or those with private commercial interests. We must attempt to understand each other’s interests and obligations, and see the discourse from the perspective of those on the opposite side.

Science can and should be common ground; a way of thinking and approaching the problems critically, but also a means by which knowledge production and serendipity can be optimized. Academics from different disciplines, who are steeped in those scientific ideals of testing and refuting, are one way in which that interactive discourse can be facilitated. Perhaps most importantly, in the digital age, is the need for technology professionals and technology industry representatives, particularly those with some influence within their organizations as well as independent experts, to be present and to engage fully and openly. And while it would be valuable to have some of these groups formally discussing these areas under the auspices of international organizations like the UN and UNESCO, through the Office of the High Commissioner for Human Rights (OHCHR) and the principal treaty bodies, it is important given how swiftly technology moves, to have adaptable frameworks for discourse and informal policy advice that is truly interdisciplinary and diverse.

7 Mainstreaming Science and Human Rights in UNESCO

Yvonne Donders and Konstantinos Tararas

7.1 Introduction

The promotion of justice, the rule of law, and human rights as prerequisites for the consolidation of peace and security is common ground in the United Nations (UN) system. The uniqueness of the mandate of the United Nations Educational, Scientific and Cultural Organization (UNESCO) lies in the specificity of its pathway and its approach to peace. For UNESCO, the achievement of these goals is promoted through greater “collaboration among the nations through education, science and culture” (Article 1 UNESCO Constitution).¹ In addition to delineating the Organization’s playing field, this proclamation carries a double symbolic value. Firstly, it presages the inclusion of a science-related human right in the Universal Declaration of Human Rights (UDHR). Secondly, it places emphasis on the significance of international cooperation and exchange if science is to fulfil its role in promoting human well-being. While education is a field where competition among UN agencies grew considerably over the years, the broad domains of science and culture are still mainly the prerogative of UNESCO.

By virtue of this mandate, UNESCO has adopted legal instruments and has developed programmes and activities in the field of science and human rights, most notably in the field of bioethics and the ethics of science. Its Member States have created several bodies to advise on issues and challenges relating to these topics: the Intergovernmental Bioethics Committee (IGBC)² composed of representatives of Member States; the International Bioethics Committee (IBC)³ composed of independent experts; and the World Commission on the Ethics of Scientific Knowledge and Technology (COMEST),⁴ also composed of independent experts.

The articulation of human rights and science is interwoven with UNESCO’s efforts to implement new global frameworks such as the 2030 Agenda for Sustainable Development and its Sustainable Development Goals (SDGs) and the New Urban Agenda. It was also an important dimension of the Organization’s responses to the challenges of the COVID-19 pandemic. This approach builds on UNESCO’s lead role in the Scientific Advisory Board, the UN expert body that was established in 2013 to bring science to the core of the sustainable development agenda.

This contribution discusses how UNESCO has worked on human rights in relation to science, and on science in relation to human rights with emphasis on standard-setting. It attempts to foreground the core approaches underpinning these efforts; to highlight the evolution in the Organization’s thinking; and to show to what extent these are aligned with and promote the advancement of the right to enjoy the benefits of scientific progress as included in human rights instruments, in particular the dimensions of scientific freedom, protection against harm, benefit sharing, and international cooperation.

7.2 Foundations of UNESCO’s Action on Human Rights

7.2.1 Mandate

The vision of an inextricable link between peace and the realization of human rights is the foundation of UNESCO’s mandate and its work in this domain. The Organization’s constitutional commitment was immediately translated into action. UNESCO contributed to the reflection underpinning the elaboration of the UDHR. Through a committee especially created in 1947, UNESCO studied the philosophical foundations of human rights in order to foreground convergences between various cultures and schools of thought.⁵ UNESCO was also the first UN entity that undertook to disseminate information about the UDHR through mass communication programs and teaching materials in schools, and to incorporate it in its programs.⁶ In the following decades, drawing on its normative action, UNESCO contributed to the promotion of human rights in its fields of competence through research, capacity development, advocacy, and agenda-setting.

While UNESCO’s constitutional mandate is broad and covers the promotion of all human rights, its action focuses on the rights directly linked to its mandate. These include: the right to education; the right to freedom of opinion and expression, including the right to seek, receive, and impart information; the right to take part in cultural life and artistic freedom; the right to water and sanitation; and the right to enjoy the benefits of scientific progress and its applications.

UNESCO’s general commitment to human rights mainstreaming was reaffirmed in the early 2000s. The Organization’s 2003 Human Rights Strategy elevated the integration of a human rights-based approach (HRBA) in all its activities to a house-wide priority. This UN-wide approach, forged out of the momentum of the 1997 UN Reform, implies that the work of UN Agencies and Programmes, including that of UNESCO, is guided by human rights principles, as laid down in the UDHR and other international human rights instruments. These principles include: universality; indivisibility and interdependence of all human rights; equality and nondiscrimination; participation and inclusion; accountability; and the rule of law.⁷ HRBA is a key programming principle in UNESCO’s Medium-Term Strategy for 2014–2021, reaffirmed in the draft Medium-Term Strategy for 2022-2029⁸, and a cornerstone for the implementation of gender equality, one of the Organization’s two global priorities.⁹

The right to enjoy the benefits of scientific progress and its applications is included in Article 27 UDHR and in Article 15(1)(b) of the International Covenant on Economic, Social and Cultural Rights (ICESCR). These instruments recognize that this right includes the right of individuals to enjoy the benefits of scientific advancement and the rights of scientists to freely conduct science and to have the results of their work protected. Another inherent component of the right to enjoy the benefits of scientific progress and its applications is the protection from possible harmful effects of science. A cross-cutting dimension of this right, and of the Covenant, is international cooperation.

UNESCO has actively supported the elaboration of this right. Most importantly, it drew the right from its oblivion by initiating a series of experts’ meetings that led to the adoption by a group of experts of the Venice Statement on the Right to Enjoy the Benefits of Scientific Progress and its Applications in July 2009.¹⁰ This statement aimed to clarify the normative content of the right, as well as to generate discussion among all relevant stakeholders with a view to enhancing its implementation.

7.2.2 UN Global Frameworks

Being part of the UN family, UNESCO’s work fits within a broader context defined by human rights-driven global action frameworks, most notably the 2030 Agenda for Sustainable Development and the SDGs, and the New Urban Agenda. Agenda 2030 and the SDGs embody an unprecedented universal consensus on key prerequisites for sustainable human development that are anchored in human rights. Guided by the commitment of “leaving no one behind,” Agenda 2030 marks a paradigm shift towards an inclusive and transformative vision of human development that establishes clear imperatives for the UN system regarding respect for, protection of, and fulfilment of human rights. Moreover, acknowledging their close interconnection, Agenda 2030 endorses a holistic approach to the set of challenges at hand, significantly expanding the list prioritized by the Millennium Development Goals (MDGs) and making the elimination of inequalities a transversal thread. Contrary to previous political commitments, Agenda 2030 constitutes – to paraphrase the preamble of the UDHR – “a common standard of achievement for all peoples and all nations” towards which all efforts must converge. Interestingly, science is a cross-cutting thread of Agenda 2030. The preamble’s acknowledgement of science, technology and innovation (STI) as a key driver for sustainable development, is mirrored by the inclusion of as many as twenty-three STI-related SDG targets.

The New Urban Agenda¹¹ localizes the commitments of Agenda 2030 and the content of the SDGs by acknowledging that local authorities are also responsible for protecting, respecting, and fulfilling the human rights of the inhabitants at the city level, in line with central governments.

UNESCO has placed the implementation of Agenda 2030 at the core of its action. The Organization focuses on and contributes significantly to nine SDGs, namely: SDG 4 (Quality Education); SGD 5 (Gender Equality); SDG 6 (Clean Water and Sanitation); SDG 9 (Industry, Innovation and Infrastructure); SDG 11 (Sustainable Cities and Communities); SDG 13 (Climate Action); SDG 14 (Life below Water); SDG 15 (Life on Land), and SDG 16 (Peace, Justice and Strong Institutions).¹² In connection with these SDGs, UNESCO has the following key roles: internationally recognized global or shared leadership and coordination; monitoring and benchmarking; global advocacy to sustain political commitment; leading or co-leading global multi-stakeholder coalitions; normative mandate and provider of upstream policy support and capacity development. Furthermore, the Organization contributes to SDG 1 and 10, and is concerned with aspects of SDG 17.¹³

Table 7.1 Science Technology and Innovation (STI) and Agenda 2030

Areas explicitly mentioned in Agenda 2030	SDGs making explicit references to STI	SDG targets making specific references to STI
Science	4; 14	4.b ; 14.3 ; 14.4 ; 14.5
Technology	1; 2; 5; 6; 7; 9; 17	1.4 ; 2.a ; 5.b; 6.a ; 7.a; 7.b ; 9.4 ; 9.a ; 9.c; 17.7 ; 17.16
Innovation	8	8.2 ; 8.3
STI	9; 12; 14;17	9.5 ; 9.b; 12.a ; 14.a ; 17.6 ; 17.8

7.3 UNESCO’s Approach to Science and Human Rights

UNESCO’s work in the field of science and human rights, and in particular the right to enjoy the benefits of scientific progress and its applications, has evolved significantly. The Organization has explicitly focused on promoting an ethical and rights-based approach to the advancement of science and technology, inter alia, by fostering the rights and freedoms of scientific researchers and an equitable sharing of the benefits of that research. It has also addressed the ethical challenges deriving from cutting-edge science, for instance in connection with bioengineering and biotechnology, and, more recently artificial intelligence, big data, and the Internet of Things. Its work has also supported a stronger interlinkage between scientific evidence and policy-making and it has fostered gender equality in sciences by strengthening the opportunities of women. A good example of the last is UNESCO’s program For Women in Science, which it has hosted since 1998 in cooperation with L’Oréal. The motto of this program is “the world needs science, science needs women.” It aims to reward excellent female scientists for their important contributions to the progress of science, either in life sciences or in the fields of physical sciences, mathematics, and computer science. In the last 20 years, more than 3100 scientists from 117 countries have been supported and more than 50 countries grant national and regional scholarships under the flag of this program.¹⁴

7.3.1 Early Approaches: Do No Harm, Benefits Sharing, and International Cooperation

In the decades after the adoption of the ICESCR, States focused on three aspects of science. The first aspect was promoting “the optimum utilization of science and scientific methods for the benefit of mankind and for the preservation of peace and the reduction of international tensions.”¹⁵ The second was to address “dangers which constitute a threat, especially in cases where the results of scientific research are used against mankind’s vital interests in order to prepare wars involving destruction on a massive scale or for purposes of the exploitation of one nation by another, and in any event give rise to complex ethical and legal problems.”¹⁶ Finally, States aimed to promote international cooperation so that the full potential of scientific and technological knowledge could be promptly geared to the benefit of all peoples.¹⁷

These dimensions were explicitly included in the Recommendation on the Status of Scientific Researchers, adopted by the Member States of UNESCO in 1974. The Recommendation calls upon States to foster an environment where scientific researchers can “contribute positively and constructively to the fabric of science, culture and education in their own country, as well as to the achievement of national goals, the enhancement of their fellow citizens’ well-being, and the furtherance of the international ideals and objectives of the United Nations.”¹⁸ At the same time, the Recommendation allows States a considerable margin of appreciation. Deviations from the Recommendation are acceptable under the condition that the cases where these apply are specified “as explicitly and narrowly as possible.”¹⁹

This three-pronged approach of States is also included the Recommendation concerning Education for International Understanding, Co-operation and Peace and Education relating to Human Rights and Fundamental Freedoms adopted at the same time. Specifically, the Recommendation recognizes as an integral part of human rights education the duty to promote “the inadmissibility of using science and technology for warlike purposes and their use for the purposes of peace and progress.”²⁰ The Recommendation also underscores the role of education in harnessing the power of knowledge towards problem-solving and the critical role of international cooperation in this regard.²¹

Another general feature of UNESCO’s approach is the importance allocated to culture. In a reply to a survey by the UN Commission on Human Rights in 1976, the Organization’s Director-General observed that science and technology “are merely the instruments for carving out decisions made elsewhere – what we find at the fountainhead of the long and complex chain of those decisions but the determining factor of culture?” Hence, “the use made of science and technology, like pure science itself, is a matter of culture.”²² The role of culture is underscored later on in the context of reflection about ethical considerations in relation to scientific discoveries and the progress of technology. A valuable dialogue between cultures is seen as crucial for bioethics, in the same way as the breaking down of barriers between disciplines.²³

The approach and emphasis of the two Recommendations of 1974 actually underpin the several instruments related to science adopted around the same time in the broader context of the UN. Most of these concentrate on international cooperation in the field of science and on the possible harmful effects of science and technology with a focus on the duties of States and scientists to promote, conduct, and use science in a responsible way. For example, the Charter of Economic Rights and Duties of States, adopted by the UN General Assembly in 1974, recognizes a right of States – not of individuals – to benefit from scientific advancement and developments in science and technology. It also calls upon States to promote international scientific and technological cooperation and the transfer of technology to developing countries, as well as facilitate access of developing countries to the achievements of modern science and technology (Article 13).

Similarly, the Declaration on the Use of Scientific and Technological Progress in the Interests of Peace and for the Benefit of Mankind, adopted by the UN General Assembly in 1975, concentrates on the possible abusive use of science contrary to human rights. Its preamble acknowledges that scientific and technological achievements could improve the conditions of peoples and nations and, at the same time, cause social problems or threaten human rights and fundamental freedoms. Other issues in this Declaration include non-discrimination and international cooperation to ensure that the results of science and technology are used in the interests of peace and security, and for the economic and social development of peoples. It is further laid down that States should prevent the use of scientific and technological development to limit the enjoyment of human rights and protect the population from possible harmful effects of the misuse of science and technology (Article 2).

7.3.2 Emphasis on Science and (Bio-)Ethics

About two decades later, UNESCO initiated the adoption of several international instruments relating to science in relation to ethics and bioethics. The Universal Declaration on the Human Genome and Human Rights, adopted by UNESCO’s General Conference in 1997 and endorsed by the UN General Assembly in 1998, focuses on the potential abuse of science and research. In this sense, it echoes a series of General Conference resolutions that express concern and call upon UNESCO to take initiatives around such abuse of science, such as the development of sophisticated weaponry.²⁴ The Declaration states, for instance, that researchers have special responsibilities in carrying out their research, including meticulousness, caution, intellectual honesty, and integrity (Article 13). It also states that persons have the right to be informed about research on their genome and that such research should in principle not be carried out without a person’s consent. If such consent is not possible, research should be carried out only for the person’s health benefit or the health benefit of others (Article 5). The Declaration also urges States to promote international dissemination of knowledge, in particular between industrialized and developing countries (Article 18).

The idea of sharing the benefits of science is more clearly present in the International Declaration on Human Genetic Data, adopted by the General Conference of UNESCO in 2003. According to this Declaration, the benefits of science, including access to medical care, the provision of new diagnostics, facilities for new treatments or drugs deriving from research, and support for health services, should be shared with society as a whole and with the international community (Article 19).

An explicit reference to the sharing of benefits of science can be found in the Universal Declaration on Bioethics and Human Rights, adopted by UNESCO’s General Conference in 2005. Article 15 includes that “[b]enefits resulting from any scientific research and its applications should be shared with society as a whole and within the international community, in particular with developing countries.” Part of such benefits could be access to scientific and technological knowledge (Article 15(1)e). This provision focuses more on the sharing of the results of science and less on the advancement of science or the freedom to conduct science. UNESCO’s International Bioethics Committee (IBC) extensively elaborated on the concept of benefit sharing in a report issued in 2015.²⁵ It explicitly linked Article 15 of the Declaration to Article 27 UDHR and Article 15 ICESCR. It reaffirmed the importance of sharing the benefits of science with society as a whole, and with the international community, while also addressing the possible tradeoff with the protection of intellectual property and patents. The IBC further maintained that sharing should be seen as participation and not as top-down beneficence, emphasizing the importance of capacity building and science education, open access to information, and empowerment and participation in the production of knowledge.

7.3.3 Broadening the Scope: Science-Based Decision Making

7.3.3.1 UNESCO Declaration of Ethical Principles in Relation to Climate Change

In recent years, UNESCO’s work in the field of science and human rights was given a new impetus. Much influenced by the global discussions on sustainable development and climate change, Member States of UNESCO elaborated and adopted in 2017 the UNESCO Declaration of Ethical Principles in relation to Climate Change. This Declaration emphasizes the fundamental importance of science, technological innovation, relevant knowledge, and education for sustainable development in the response to climate change. Several of the human rights dimensions of science, such as prevention of harm and international cooperation, are reflected in the Declaration. The Declaration adds an important new dimension in relation to science and human rights, namely the promotion of decision-making based on science.

As regards the prevention of harm, the Declaration maintains in Article 2 that people should aim to “anticipate, avoid or minimize harm, wherever it might emerge, from climate change, as well as from climate mitigation and adaptation policies and actions.” Science is also relevant in relation to another dimension of possible harm, namely the precautionary principle. Article 3 states that: “Where there are threats of serious or irreversible harm, a lack of full scientific certainty should not be used as a reason for postponing cost-effective measures to anticipate, prevent or minimize the causes of climate change and mitigate its adverse effects.”

International cooperation is included in several parts of the Declaration. For instance, Article 2 states that States should “seek and promote transnational cooperation before deploying new technologies that may have negative transnational impacts.” Article 7 includes that “scientific cooperation and capacity building should be strengthened in developing countries.”

Scientific freedom is less present in the Declaration, but it is included in Article 7(4) that States should “take measures which help protect and maintain the independence of science and the integrity of the scientific process.”

The Declaration adds explicit provisions on scientific knowledge and integrity in decision-making. Article 7(1) states that “decisions should be based on, and guided by, the best available knowledge from the natural and social sciences, including interdisciplinary and transdisciplinary science, and by taking into account, as appropriate, local, traditional and indigenous knowledge.” States should therefore “build effective mechanisms to strengthen the interface between science and policy to ensure a strong knowledge base in decision-making” (Article 7(4)d).

7.3.3.2 UNESCO Recommendation on Science and Scientific Researchers

One of the most crucial instruments by UNESCO that connects science and human rights is the Revised Recommendation on Science and Scientific Researchers, also adopted in 2017. This document supersedes the Recommendation on the Status of Scientific Researchers of 1974. As the Director-General noted in her report on the revision, the Recommendation reflects a “conceptual paradigm shift toward systematically addressing risks and responsibilities in science, while recognizing that the freedom of expression and conscience of researchers and their professionalism is its backbone.”²⁶ The idea driving the Recommendation was the establishment of closer links with the SDGs, and in particular Target 9.5 that aims to enhance scientific research. The Recommendation underscores the importance of another application of science, namely the use of scientific and technological knowledge in decision-making (paragraphs 5 (g), 7, 8, and 9).

The revised Recommendation sets out the operational standards for a contemporary and forward-looking vision for science. A main innovation of the Recommendation is the recognition that harnessing the transformative power of science requires a holistic approach, which is anchored unequivocally in human rights.

The Recommendation adopts a broad strategy, looking at the whole process of science as a departure point for determining the role of scientific researchers. In doing so, the Recommendation pays specific attention to new developments, such as the internationalization of science and mobility of scientists, the changing security and environmental concerns, the increased role of the private sector, the increased concern about the ethical aspects of the science enterprise, and the interdisciplinary nature of science, including social and human sciences. All these have led to an increased recognition that the responsibilities of scientists have widened and that a firm link with human rights is required.

Human rights is set as a cornerstone for building a sound science, technology, and innovation system indispensable for achieving sustainable development. In that spirit, the Recommendation incorporates human rights in multiple ways. By explicitly setting the human right to share in scientific advancement and its benefits (paragraph 21) as a reference point, the Recommendation broadly endorses its different elements, including the sharing of its benefits, academic freedom, protection from possible harm, and international cooperation. It also refers to the human rights of scientists, the rights of people to access knowledge produced by science, and the rights of people affected.

Among its many important principles, three deserve to be highlighted in this context. First of all, emphasis is placed on the responsibility of science towards UN ideals of human dignity, progress, justice, peace, welfare of humankind, and respect for the environment (paragraph 4) and the need to subject scientific conduct to universal human rights standards (paragraphs 18a,e, 20a,b,c, 21, 22, 42). As a result, science should be fully integrated into efforts to develop more humane, just, and inclusive societies. A second feature relates to the need for science to interact meaningfully with society and vice versa towards tackling global challenges (paragraphs 4, 5 c, 13d, 19, 20, 22). This calls for the active participation of society in science and research in a democratic and horizontal manner, through the identification of knowledge needs, the conduct of scientific research, and the use of results. Finally, the Recommendation promotes science as a common good (paragraphs 6, 13e, 16a–v, 18b,c,d, 21, 34e, 35, 36, 38). According to the text, this entails that public funding of research and development should be perceived as a form of public investment, the returns on which are long-term and serve the public interest. Likewise, States should facilitate and encourage open science, including the sharing of data, methods, results, and the knowledge derived from it, in view of its potential benefits. It also entails the removal of obstacles preventing women and other underrepresented groups from receiving, on an equal footing, basic education, training and, ultimately, access to employment in scientific fields.²⁷

7.3.3.3 UNESCO and the UN Scientific Advisory Board (2013–2016)

The work of UNESCO in the UN Scientific Board is also worth brief exploration. The need to bring science to the core of the sustainable development agenda was acknowledged by the UN Secretary-General’s High-level Panel on Global Sustainability in its report entitled “Resilient People, Resilient Planet: A Future Worth Choosing,” adopted in January 2012.²⁸ Beyond addressing global challenges, the Panel insisted on the importance of a strengthened science policy interface as a necessary complement to efforts on economic and social aspects, and factors such as inequalities. The Panel considered that this objective could be best achieved either by “naming a chief scientific adviser or establishing a scientific advisory board with diverse knowledge and experience” (Recommendation 51, page 75).

UNESCO played a decisive role in taking this Recommendation forward. It convened the Executive Heads of UN organizations with a science-related mandate and representatives of major scientific bodies into an ad hoc group mandated to provide advice to the SG and the UN system as a whole. Recognizing the strategic opportunity, the ad hoc group opted for the establishment of a representative body, the Scientific Advisory Board. This body came into being in September 2013. UNESCO hosted its secretariat and the UNESCO DG took the lead in establishing the body and taking up the function of its chair.²⁹

The Scientific Advisory Board was given an ambitious mandate. Its areas of focus included improving coordination among UN entities having a mandate in science, technology, engineering, and humanities; avoiding mission creep and overlap and curbing counter-productive competition; advising on 2030 Agenda science priorities; and providing insights on the promotion of democratic global governance for a responsible and ethical development of science that reinforces sustainability.³⁰

To fulfil its mandate, the Board was tasked to connect and mobilize all relevant scientific fields for the purpose of fostering coherence. And so it covered the basic sciences, engineering and technology, social science and humanities, ethics, health, economic, behavioral, environmental, and agricultural sciences.

Thus defined, the mandate given to the Scientific Advisory Board opened important avenues for connecting science with human rights considerations. The final report of the Scientific Advisory Board with its main findings and recommendations, submitted in September 2016, reveals that human rights-related considerations were on its radar. First of all, it explicitly recognized science as a public good, which deserves to be valued more highly, employed more widely, and used effectively by decision-makers at all levels.³¹

A corollary to considering science a public good was the emphasis on a society-policy-science interface. The science process should thus involve a diversity of stakeholders, including government, civil society, indigenous peoples and local communities, businesses, academia, and research organizations, each with their own accountabilities. This way, the Board considered, the diverse perspectives and priorities could be synthesized in a manner aligned with the evidence and serve the long-term interests of society and the planet.³²

Another important aspect related to human rights is the advocacy for a holistic approach to science with emphasis placed both on knowledge production for innovation (basic research) and applied research, as well as on linking such factors as health, education, opportunity, incomes, social mobility, and nutrition. This reaffirmed the close interlinkages between the right to enjoy the benefits of scientific progress and other human rights related to health, food, labor, and education.

Finally, the influence of human rights and the “leave no one behind” vision of Agenda 2030 is evident in its emphasis on inequalities. The report calls for co-designing and co-ownership by all as the basis for developing science, technology and innovation across the board. It stresses that the complexity of today’s world and its challenges require the mobilization of resources and assets in all parts of the world, developing and developed, as it passes imperatively through the elimination of gender disparities.³³

A full assessment of the work of the Scientific Advisory Board is outside the scope of this contribution. However, it is fair to say that the Board partially met the expectations surrounding its creation. Counted among its strengths and positive contributions are its call for a more central role for science in fostering sustainable development and also the emphasis on a holistic approach to science. Another is its echoing of fundamental principles of Agenda 2030, in particular transparency, participation, and inclusion, and the elimination of inequalities. It is probably no coincidence that these elements were key to the vision for science embodied in the 2017 Recommendation on Science and Scientific Researchers. Yet, the Board did not succeed in building the case for a holistic approach to human rights with the right to enjoy the benefits of scientific progress and its applications at its core, at least not using explicit terms. That was a missed opportunity. A strong recommendation towards such an orientation at the beginning of the SDG era could perhaps have helped integrate a human rights lens into the monitoring process of specific targets and indicators.

7.4 Concluding Remarks

The significant role of science in consolidating peace, fostering human well-being, and achieving sustainability cannot be overestimated. Hence, it is only natural that science, technology, and innovation were woven into the fabric of the 2030 Agenda for Sustainable Development, cutting across virtually all of the seventeen SDGs, including their targets and means of implementation.

This contribution shows that UNESCO, with its specific mandate in the field of science, has worked on human rights in relation to science, and on science in relation to human rights, in many different ways. Shifting over the years from a narrower to a more holistic approach, it has developed numerous instruments that connect the advancement of science to ethical and human rights standards and principles. These include academic freedom and protection of the rights of scientists, protection against harm, sharing benefits of scientific and technological advancements, including related knowledge and their applications, international cooperation and, more recently, science-based decision-making. In addition, UNESCO embarked since November 2019 on the elaboration of two new instruments: on ethics of artificial intelligence³⁴ and on open science,³⁵ potentially enhancing the science-related normative arsenal. Standard-setting efforts have been reinforced by converging advocacy initiatives such as the Joint Appeal for Open Science, launched by the leadership of UNESCO, WHO and OHCHR in October 2020. The appeal acknowledged the right to enjoy the benefits of scientific progress and its applications as the cornerstone of efforts to promote open, inclusive and collaborative science. The idea of linking science to human rights has clearly underpinned UNESCO’s position and advice during the COVID-19 pandemic. For example, it is a central tenet of the statements issued by the Organizations’ ethics bodies, COMEST and IBC on global ethical considerations and on global vaccines equity and solidarity.³⁶

It should be noted that all UNESCO science-related instruments – being declarations or recommendations and not treaties – are not legally binding upon States. Moreover, their monitoring is mostly State-driven³⁷ and therefore not comparable to that relating to UN human rights treaties and their expert bodies.

Yet, these instruments demonstrate a large degree of consensus among States on the need to promote science as a public good accessible to all and to integrate human rights norms and principles into the advancement and promotion of science and technology and related policies. At the same time, it is important that the articulation of the link between science and human rights goes beyond the realm of aspirations.

The General Comment on science and economic, social and cultural rights,³⁸ adopted by the Committee on Economic, Social and Cultural Rights, is a milestone in removing some of the normative ambiguity. The General Comment reserves an important place for the work of UNESCO. Further to reiterating the definition of science developed by UNESCO, the General Comment recognizes particularly the Universal Declaration on Bioethics and Human Rights and the Recommendation on Science and Scientific Researchers, as sources of inspiration for the elaboration of the relationship between science and human rights. The various dimensions of academic freedom,³⁹ protection against harm,⁴⁰ sharing benefits of scientific and technological advancements,⁴¹ international cooperation,⁴² and science-based decision-making⁴³ – that the Committee considers part of the core obligations of States in the implementation of the right to enjoy the benefits of scientific progress⁴⁴ – are prominent in those UNESCO instruments.

In light of this development, the emphasis now needs to be placed on developing appropriate tools, instruments, and guidance for States and other stakeholders to implement these ambitious standards through sustainable laws, policies, and practices. A large part of the challenge ahead derives from the breadth of the approach. Indeed, a comprehensive vision of science – going beyond benefits sharing, and the prevention of the negative effects of scientific development – emerges as the necessary point of departure for all related efforts. The UNESCO instruments actually build that case convincingly. However, while a comprehensive approach can respond more adequately to the complexity of the issues at stake, it also raises the difficulty of translating the vision into praxis. In the absence of clear guidance and extensive State practice, the numerous and broad principles contained in the 2017 Recommendation could hamper or discourage implementation and risk transforming the instrument into an empty shell. The first monitoring of the 2017 Recommendation, launched in 2020, offers an opportunity for addressing some of the many operational challenges. However, unless that process engenders the development of specific programs by UNESCO, its Member States, and other stakeholders, the hurdles will remain high if not insurmountable.

Clearly, a positive change also depends on the uptake of issues linked to the right to enjoy the benefits of scientific progress and its applications by the Committee in its examination of periodic reports. Current reporting and the related discussions with States Parties are insufficient. The recently adopted General Comment could be an excellent tool to promote such reporting and discussions before the CESCR. An ideal development would be that monitoring by the Committee and that of the UNESCO instruments evolve to be seen as mutually beneficial and reinforcing one another. The enhanced operational convergence resulting from such an approach is likely to spill over into other human rights monitoring processes, including the Universal Periodic Review of the UN Human Rights Council where broader science-related issues remain absent.

Investing further in strengthening coordination and coherence across the UN system towards a closer articulation between science and human rights should be a priority in the years to come. Integrated approaches are necessary in view of the multitude of entities working in the vast realm of science. They become even more compelling given the interconnectedness between the different scientific fields at a time when the UN is expected to focus increasingly on accelerating the implementation of Agenda 2030 while coping with the consequences of the COVID-19 pandemic. The September 2019 SDG Summit addressed an urgent call for accelerated action, premised on human rights and the “leave no one behind” vision. It also reiterated the importance of science, technology and innovation for sustainable development, placing emphasis inter alia on promoting the use of scientific evidence from all fields, empowering all persons with relevant knowledge and skills and fostering international cooperation.⁴⁵ Furthermore, the UN General Assembly acknowledged the need for science-based comprehensive and coordinated responses to the COVID-19 pandemic.⁴⁶

Given the frenetic pace of scientific innovation but also its critical role in addressing challenges to human well-being – the COVID-19 pandemic being a tragic reminder thereof – it is crucial that the discussion about operationalizing the link between science and human rights advances urgently and that it involves all concerned stakeholders. Their ownership of contemplated solutions will be a key success factor. The increasing focus of scientific and engineering communities on problem-solving in relation to development challenges presages that a call for cooperation will not remain unanswered.

8 Considering the Right to Enjoy the Benefits of Scientific Progress and Its Applications As a Cultural Right A Change in Perspective

Mylène Bidault ^*

Whether the right to enjoy the benefits of scientific progress and its applications is a cultural right is a fundamental question and far from a matter of mere form.

A positive answer invites us to reconsider the meaning of, and to give full scope to, the “right to science” increasingly invoked today in academic and NGO circles, as well as by human rights mechanisms. Considering the right to enjoy the benefits of scientific progress and its applications as a cultural right means understanding it as an integral part of the rights that enable people to access and make use of the most diverse sources of knowledge and the cultural resources most meaningful for them. It also means enabling people to contribute to those resources, and to use them for the benefit of their own dignity and development.

Consequently, this right is more than simply a right to science. The time has come to speak of a much more substantial “right to participate in scientific life” and to see it as a component of the right to participate in cultural life. This right enables everyone to have access to, and contribute to, the development of science, and to exercise his or her critical and scientific spirit in everyday life.

This does not mean that everyone ought suddenly to become a high-level scientific researcher; but rather, that everyone can aspire to be a researcher in his or her own spheres of interest, using and deploying knowledge for the benefit of his or her own development. Herein lies the eminently human and emancipatory dimension of this right.

8.1 Pure Formal Reasons

Several elements, both in international human rights treaties and declarations, as well as in the practice of monitoring mechanisms, call for the right to enjoy the benefits of scientific progress and its applications to be considered as a cultural right.

In the first place, the right to enjoy the benefits of scientific progress and its applications is often found juxtaposed with the right to take part in cultural life in universal and regional texts. In particular, it is to be found in Article 27 of the Universal Declaration of Human Rights (UDHR) and Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), which are usually considered to set out cultural rights.¹

Furthermore, the resolutions of the Human Rights Council establishing and subsequently renewing the mandate of the Special Rapporteur in the field of cultural rights expressly mention the right to enjoy the benefits of scientific progress and its applications as an integral part of the Rapporteur’s mandate. The Special Rapporteur has devoted an entire thematic report to this right.² Member States of the Council seem to have naturally considered, by consensus, that the right to enjoy the benefits of scientific progress and its applications is a cultural right.

8.2 Substantive Reasons

But these elements are ultimately only formal indications. The argument that the right to enjoy the benefits of scientific progress and its applications should be considered as a cultural right is supported by far more substantial grounds. Its proximity in the texts to the right to take part in cultural life seems to be no coincidence. It appears, at least, to be the result of a particularly accurate intuition on the part of the authors of the founding texts. And, as will be explained below, it makes it possible today to deploy the scope of this right in a far more powerful and significant manner.

When one looks more closely at the structure of Article 15 of ICESCR, one understands that, when taken as a whole, it is the universal right of access to culture and science that is protected by this provision, as Farida Shaheed, the first Special Rapporteur in the field of cultural rights, has emphasized.³ The right is accompanied by correlative obligations on States to respect and protect creative freedoms; to respect and protect the moral and material interests resulting from scientific, literary or artistic productions; to ensure the conservation, development and diffusion of science and culture; and to develop international contacts and cooperation in these fields.

But there is an even more fundamental reason for considering the right to enjoy the benefits of scientific progress and its applications as a cultural right: science is part of culture.

8.2.1 The Scientific Field As an Integral Part of the Cultural Field

The right to take part in cultural life necessarily implies a right to take part in scientific life, which must be understood as legally based on both Article 15(1)(a) of the ICESCR (right to take part in cultural life) and Article 15(1)(b) (right to enjoy the benefits of scientific progress and its applications). The second element is in fact a specification of the first one.

Let me explain what is meant by “cultural field.” The 2007 Fribourg Declaration on Cultural Rights proposes a definition of “culture” as covering “the values, beliefs, convictions, languages, knowledge and the arts, traditions, institutions and ways of life through which a person or group expresses their humanity and the meanings that they give to their existence and to their development” (Article 2).⁴

This definition has been a major source of inspiration for both the Committee on Economic, Social and Cultural Rights (hereinafter the Committee) and the Special Rapporteur in the field of cultural rights throughout her work.

The cultural field is therefore very broad, as reflected in the list inserted in the Fribourg Declaration: values, beliefs, convictions, languages, knowledge, arts, traditions, institutions and ways of life. In its General Comment No. 21 on the right to take part in cultural life, the Committee defined what was covered by “cultural life” and added elements to this list, including in particular “methods of production or technology” (§ 13). The Committee stressed that “culture is a broad, inclusive concept encompassing all manifestations of human existence” (§ 11). It is, again according to the Committee, “an interactive process whereby individuals and communities, while preserving their specificities and purposes, give expression to the culture of humanity” (§ 12).

The Committee has further clarified that science is a part of culture in its new General Comment 25 (2020) on science and economic, social and cultural rights.⁵ A whole paragraph 10 is devoted to this aspect. Reiterating that culture is an inclusive concept encompassing all manifestations of human existence, the Committee added that “Cultural life is therefore larger than science, as it includes other aspects of human existence; it is, however, reasonable to include scientific activity in cultural life. Thus, the right of everyone to take part in cultural life includes the right of every person to take part in scientific progress and in decisions concerning its direction.”

This does not mean that the field of culture is a great pool of conceptual magma in which all human endeavors merge and agglomerate. The specificity of the scientific field, that is, what makes it an element apart from the other elements of culture, must be defined (see Section 8.3.2.below).

8.3 Significant Impacts

When considering why the question of whether the right to enjoy the benefits of scientific progress and its applications is a cultural right is important, one might be tempted to ask what difference such an understanding actually makes. Is this a purely theoretical discussion without practical implications, or are there important consequences to understanding the right to enjoy the benefits of scientific progress and its applications as a cultural right? Framing the question this way will help evolve our understanding of the content of the right.

8.3.1 What Is a Cultural Right?

Important elements of definition have been provided by the Special Rapporteur in the field of cultural rights, who has drawn inspiration from the work of the Committee and its General Comment No. 21, as well as from the work of the Fribourg Group. Several elements have been identified:

1. - Cultural rights are the rights of persons “to develop and freely express their humanity, their world view and the meaning they give to their existence and development.”

2. - People do this “through, inter alia, values, beliefs, convictions, languages, knowledge and the arts, institutions and ways of life.”

3. - Cultural rights also protect “access to cultural heritage as important resources enabling such identification and development processes.”⁶

Cultural rights are therefore a broad set of freedoms and rights of access to and participation in resources. They protect:

1. - The freedom of persons, alone or in community with others, to choose and build their identity, world view and the meaning they give to their humanity;

2. - The freedom of persons, alone or in community with others, to participate in cultural life while expressing that identity, world view or humanity; and

3. - The rights of persons, alone or in community with others, to have access to the resources necessary for the development and fulfilment of their identities, world views and humanity, which implies the right to know, understand, discuss and transmit these resources, to make use of them and to participate in their development.

“Knowledge” in the broadest sense enables people in the same way as “beliefs” and “convictions” do. Knowledge enables individuals to build their identity, humanity and worldview, to forge their responses to adversity, to conceive of the world, and to conceive of themselves as part of this world.

It is sometimes difficult to separate beliefs from knowledge, whether these be individual or collective. Moreover, knowledge is not exclusively of a scientific nature – knowledge exists in the field of arts, for example, and there exist even more diverse forms of knowledge. It is from all these resources that individuals draw in order to develop themselves, arranging such resources at the individual level in a way that is very particular to them: to express their creativity, to influence their living conditions, or to overcome an ordeal such as an illness or a disaster. It is through these resources that people can “aspire” to a better future by identifying the elements they consider essential for a life with dignity.

Thus, as Farida Shaheed has strongly expressed:

The link between the right to science and the right to culture can be further understood with regard to people’s ability to “aspire.” A growing body of literature suggests that the ability to aspire – namely, to conceive of a better future that is not only desirable but attainable – is an important cultural capability that needs to be supported and developed, especially among the marginalized and vulnerable. Aspirations embody people’s conceptions of elements deemed essential for a life with dignity. Never a mere individual exercise, aspirations are informed by, and in turn inform, communities of shared cultural values and draw upon cultural heritage, including accessible, accumulated scientific knowledge. New scientific knowledge and innovations increase available options, thereby strengthening people’s capacity to envisage a better future for which access to specific technologies may sometimes be pivotal.⁷

8.3.2 The Specificity of the Scientific Field Within the Cultural Field

One important question is to define the specificity of scientific resources within this set of essential resources: what makes them different from other cultural resources. Article 15(1)(b) requires that this specificity be developed. Some elements of this are provided, again, in the report by Farida Shaheed:

As for other cultural rights, a prerequisite for implementing the right to enjoy the benefits of scientific progress and its applications is ensuring the necessary conditions for everyone to continuously engage in critical thinking about themselves and the world they inhabit, and to have the opportunity and wherewithal to interrogate, investigate and contribute new knowledge with ideas, expressions and innovative applications, regardless of frontiers. More precisely, the right to participate in cultural life entails ensuring conditions that allow people to reconsider, create and contribute to cultural meanings and manifestations in a continuously developing manner. The right to enjoy the benefits of science and its applications entails the same possibilities in the field of science, understood as knowledge that is testable and refutable, including revisiting and refuting existing theorems and understandings.⁸

The Committee, in its General Comment, takes a similar approach, cautious to refer to the specificity of science, and referring to the definition offered in the 2017 UNESCO Recommendation on Science and Scientific Researchers.⁹

To develop themselves, therefore, people draw on cultural heritage, including “accessible scientific knowledge,” which is extremely diverse; and thus we should not be afraid to speak of “scientific diversity” as an integral part of “cultural diversity.” There is no such thing as science on the one hand and culture on the other. And since we talk about cultures today in the plural form, we must also talk about sciences, given the great diversity of scientific disciplines and traditions. All of them have their contribution to make in terms of the way in which we face our world.

For example, the various medical traditions are valuable, ranging from the very Cartesian vision, which understands the human person as a machine that can be examined and healed piece by piece, to the most holistic visions that understand the human person in its inseparable dimension body-mind, in permanent relationship with its environment. This is what many non-Western approaches teach us, or reteach us. To lose this diversity would be an appalling impoverishment.

We must also be careful not to restrict the scope of what we mean by scientific, at the risk of favoring some scientific traditions to the detriment of others and thereby preventing potentially valuable and culturally diverse contributions. We must not forget too that behind the scenes of debates on what is or is not science lie powerful political dynamics and asymmetries as well as significant economic stakes. There are fierce debates, for instance, over the question of which medical drugs will or will not be covered by medical insurances, a major economic issue for pharmaceutical companies. Attacks on homeopathy do not seem to be unrelated to these issues.

8.4 From the Right to Enjoy the Benefits of Scientific Progress and Its Applications to the Right to Participate in Scientific Life

One matter considered by the Committee during its discussions on the text of the General Comment concerned whether it would be appropriate to speak of a “right to science,” rather than of a “right to enjoy the benefits of scientific progress and its applications.” It is true that the expressions “right to culture” and “right to science” are often used to refer to the rights contained in Article 15 of the ICESCR.

These expressions, which are also sometimes used by the Special Rapporteur in the field of cultural rights, are intended to give full scope to the rights set out in Article 15, which, it should be recalled, enshrines a universal, fundamental right of participation in and access to culture, including science. This was the approach adopted by Farida Shaheed, who also found that “right to science” was a strong formula that was more striking.

A similar proposal had been made by the Committee in a Draft General Comment that it circulated for comments on January 20, 2020. A whole paragraph 89, at the end of the document, proposed to use a “single broad concept named the human right to science.” However, that proposal was not retained in the final version of the General Comment.

Indeed, if we are not careful, these expressions (“right to culture,” “right to science”) can misrepresent the content of the rights and give a truncated and incomplete vision of them. On the one hand, with such expressions, culture remains separated from science. Science, understood as “verifiable and testable knowledge,” must not be situated in opposition to “culture,” but to “belief” (although there are some grey areas). Furthermore, we still speak of “culture” (which culture?) and “science” in the singular form, even though we are in front of what should be called “cultural” and “scientific diversity.”

Finally, this risks reducing the right to the notion of access only (whether to culture or to science). While access to both culture and science is obviously extremely important, in its General Comment No. 21, the Committee considered the right to participate in cultural life as concerning rights to participate in, contribute to, and have access to cultural life. A reductionist access-based approach risks reducing the rights-holder conceptually to a “consumer” of rights, whereas the spirit of human rights demands that he or she should be understood as a citizen and actor, an agent of his or her own rights.

If these expressions are used, then they must be defined so as to avoid these pitfalls, emphasizing not only the crucial issue of access, but also participation and contribution, which are no less fundamental.

8.4.1 Towards a Right to Participate in Scientific Life

The Committee, in General Comment No. 25, has chosen not to refer to a “right to science.” It underlined that “The right enshrined in article 15 (1) (b) encompasses not only a right to receive the benefits of the applications of scientific progress, but also a right to participate in scientific progress. Thus, it is the right to participate in and to enjoy the benefits of scientific progress and its applications.” The latter expression is used by the Committee throughout General Comment No. 25.¹⁰

It is useful, as the Committee did, to read Article 15 of the ICESCR in conjunction with Article 27 of the UDHR, which wording better corresponds to the nature of the right as a cultural right. The Universal Declaration sets out a right to “share in scientific advancement and its benefits.” The use of the phrase “share in” unveils the cultural element of the right, and gives context to its placement within a provision rooted in wider cultural considerations. Therefore, an ambitious approach is to understand the provision as protecting a right to participate in scientific “life,” modeled on the right to participate in cultural life. This gives us a fresh and valuable perspective on what the right truly means.

Clearly there are surface-level criticisms that can be leveled against such formula. In particular, not everyone can be a scientific researcher. But that would be a restrictive, even reductionist, reading of the right if formulated this way. Life is complex and multi-faceted and we all participate in different ways. A right to participate in scientific life does, therefore, not imply that we all ought to become high-level researchers. Rather it means that we might become researchers in our own fields and in relation to our own concerns and aspirations; that we use knowledge and refine it for our own personal development.

Farmers who cultivate their land, for example, must have access to all relevant data and information in order to eke from that land the greatest possible yield. That data is collated, analyzed, tested, and applied; processes are improved. The cycle is iterated to meet new challenges or obstacles. Farmers are not mere performers implementing guidelines and instructions manuals. They are participants, in the fullest sense of the word: observing, being creative, practicing science, adapting it, improving it. Let us draw a parallel, this time, with the right to artistic freedom: the question is not for each person to develop into a locally or world-renowned artist, but to be able to enjoy the artistic experience, for his or her own development; to be creative and to contribute, in one’s own ways, to cultural life.

There are many advantages to talking about participation in scientific life. It enables an understanding that cultural life is multifaceted, with religious, artistic, scientific and family dimensions, for example, which all are key to the development and fulfilment of people. These facets are interrelated. All cultural freedoms, including scientific freedoms, enable the emergence of a critical spirit, the imagining of possibilities, and individual and collective emancipation.

For here we find ourselves at the heart of individual freedoms. In many areas, for example in the field of the environment (think of global warming) or public health (think of sugar in food), it is a question of practicing critical thinking on a daily basis (I insist here on the term “practicing,” which I will talk about later). Why do some people lie? Because there is a lack of scientific knowledge among the public. It is certainly not in the interest of those who dominate or manipulate to promote a right to participate in scientific life.

Thus, the meaning of this right is not limited to a right of access to material results or technologies (to a progress that would be a given, indisputable), but also includes a right of access to knowledge, and to conditions allowing the development of scientific and critical thinking. That is why there is a very strong link between the right to participate in cultural life and the rights to information and education. The issue is not only about teaching “scientific content.” It is above all about providing references, knowledge and tools to enable people to make informed choices. It is about instilling curiosity and critical and scientific spirit, offering ways to develop one’s thinking in order to be free and autonomous. It is about knowing that knowledge is verifiable and contestable. The right to education and the right to participate in scientific life both require that science education programs be systematically provided at all levels.

Participation in science also means emphasizing people’s right and ability to access, use and improve cultural resources, including scientific resources, for their development and the implementation of their own rights.

Thus, for example, the person with a chronic illness needs to be able to access the best medical care available, while at the same time being put in a position to keep a critical mind, to decide for himself or herself on the care provided (understanding its side effects), to draw on knowledge to treat himself or herself, and to build his or her healing power on the basis of the traditions and beliefs that make sense to him or her. As underlined by the Committee, “States parties must guarantee everyone the right to choose or refuse the treatment they want with the full knowledge of the risks and benefits of the relevant treatment, subject to any limitations that meet the criteria of article 4 of the Covenant.”¹¹

This is why it would be useful to take up the triptych used in General Comment No. 21 to describe the content of the right to take part in cultural life: “participate, contribute, access.” It could be improved and become “access, practice, contribute.” It is here that I return to the notion of “practice,” which helps to emphasize that everyone participates by developing his or her daily practice.

8.5 Conclusion

The inclusion of the right to share in the benefits of science within the main provisions of the UDHR and the ICESCR devoted to cultural rights is fundamental. For culture is also science. This is not to level the playing field and consider science to be of the same nature as a philosophical or religious conviction, practice or way of life. No, it does have a specificity, and must be understood as “verifiable and contestable knowledge,” with “the possibility of revising and rejecting existing conceptions and theorems.”

However, science is not above culture either, it is part of it. And it is from a multitude of cultural resources, including scientific resources, that people build their identity, their world view and their humanity.

9 Implications of the Right to Science for People with Disabilities

Valerie J. Bradley

This chapter will explore the unique and critical importance of the right to science for people with intellectual, physical, and mental health disabilities. To put the subject in a global context, approximately one billion people, or 15 percent of the world’s population, experience some form of disability, and disability prevalence is higher for developing countries. One-fifth of the global total, or between 110 million and 190 million people, experience significant disabilities (The World Bank, 2019). Science and the products of science are critical to the realization of the human rights of people with disabilities and to their inclusion in society. This is especially true in the time of the corona virus pandemic which has presented additional challenges for people with disabilities over and above those visited on the general population.

The right to science, this chapter will suggest, is a powerful tool to support and inform other rights as they relate to people with disabilities. In an age dominated by fast-paced technological advances, the right to science represents a meaningful way to protect the relationship between the scientific community and people with disabilities. It is vital that people with disabilities are not excluded from decisions about scientific priorities, the conduct of scientific research, and the design of technology that will impact their lives. Diversity in the development of new technology such as algorithms, for example, is essential in order to reflect the characteristics of those people who will ultimately be governed and affected by them. For example, informed consent policies for people with intellectual disabilities are required in order to ensure that they are neither exploited nor excluded from scientific studies.

The ensuing discussion in this chapter will include the history of the disability rights movement, the ways in which the Convention on the Rights of Persons With Disabilities reaffirms the right to science, the role of science in the lives of people with disabilities – both positive and negative, the importance of scientifically based treatment interventions, the importance of including people with disabilities in scientific research and the ability of people with disabilities to gain access to scientific findings. It will conclude with some recommendations for a more inclusive approach that embraces the views and needs of people with disabilities in the scientific enterprise, including access to science as part of international monitoring of the CRPD by the Special Rapporteur and the Committee on the Rights of People with Disabilities.

9.1 History of the Disability Rights Movement

The 1960s are remembered as a period of disruption. This disruption took the form of social protest against racial segregation, authoritarianism, colonialism, discrimination against women, and an unpopular war. In the United States, this period also saw the mobilization of people with disabilities and their families. In the mental health field, consumer groups like the Mental Patients Liberation Front took on involuntary treatment and forced medication. They argued for housing, jobs, and income supports in addition to psychiatric services (Chamberlin, 1990). In the developmental disabilities field, the fledgling Association for Retarded Children (now The Arc) organized families around the country to advocate for a more positive public perception of children with intellectual disabilities and their potential (The Arc, n.d.). They sought concrete reforms such as access to education, preschool, and jobs. In the physical disability community, important figures such as Ed Roberts – one of the founders of the historic Berkeley Center for Independent Living in 1972 – rallied people with physical disabilities to take charge of their own lives, to demand the support they needed to live independently, and to reject the medical model and the notion that they needed to be fixed (Anderson, 2013). Finally, activism among the elderly also burgeoned during this period, as groups like the Gray Panthers argued against forced retirement and in favor of better health care, housing, and income support (Sanjek, 2009).

The emergence of advocacy for the human and legal rights of people with disabilities was not limited to the USA. Similar movements were taking place around the world as people with disabilities and family members advocated access to education, income support, employment, and inclusion in their communities. In 1969, a group of parent-sponsored organizations from around the world formed The International League of Societies for the Mentally Handicapped (Dybwad, 1975). The group would later become known as Inclusion International. Subsequently, multiple groups representing specific disability organizations formed in multiple countries, but it wasn’t until 1999 that an international pan-disability alliance was forged – The International Disability Alliance (International Disability Alliance, “Who We Are”). The Alliance brought together a global network of previously separate disability organizations under one umbrella. Some of the groups that joined forces were the World Blind Union, the World Federation of the Deaf, the World Network of Users and Survivors of Psychiatry, and the International Federation of Hard of Hearing People. Regional networks such as the Arab Organization of People with Disabilities and the Latin American Disabled Persons Organization were included in 2007, as well as regional organizations of persons with disabilities and their families.

The IDA was instrumental in establishing the International Disability Caucus (IDC) which was comprised of global, regional, and national organizations of persons with disabilities and allied non-governmental organizations (NGOs). The IDC became a critical player in negotiations regarding the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN General Assembly, 2007)).

According to an interview with Diana Samarasan of the Disability Rights Fund (Bell, 2014), the negotiations that preceded the passage of the CRPD were unique in that one-third of the seats in the working group that drafted the treaty were reserved for people with disabilities. Samarasan stressed that the process brought together people with disabilities from around the world and from different disability organizations including blind people, people with intellectual disabilities, people with psychosocial disabilities, people with physical disabilities, and little people. For the first time, they had a platform and a target for joint advocacy. The IDA now has a secretariat in New York and in Geneva. In addition to monitoring state compliance with the CRPD, the IDA is involved with all of the UN development organizations for inclusion of people of disabilities.

9.2 Right to Science and the Convention on the Rights of Persons with Disabilities

9.2.1 Background of the Right to Science

The human rights of people with disabilities articulated in the Convention on the Rights of People with Disabilities directly connect to the principles and aspirations of another right grounded in affirmation of global human rights – the Right to Science (hereafter RtS). The RtS posits generally that all citizens have a human right to enjoy the benefits of scientific progress. The right can be traced to Article 27 of the United Nations 1948 Universal Declaration of Human Rights, which was adopted in the wake of the human carnage that resulted from World War II. In 1966, the UN adopted the International Covenant on Economic, Social and Cultural Rights which codified the provisions of the Declaration under international law. Article 15(1) of the Covenant states that: The States Parties to the present Covenant recognize the right of everyone:

1. (a) To take part in cultural life;

2. (b) To enjoy the benefits of scientific progress and its applications;

3. (c) To benefit from the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

According to Porsdam-Mann, et al., (2018), who conducted a methodical review of the scholarship on the RtS, the right has not received the attention needed to make it a force for scientific freedom, access, policy reform, and improvement of human rights. In order to elevate the RtS, it will be necessary for the scientific community as well as those who benefit from the fruits of scientific research to find ways of promoting the right. One of the communities with a direct interest in RtS is people with disabilities and their families.

9.2.2 Provisions of the CRPD

The Convention on the Rights of People with Disabilities asserted a broad range of rights and obligations on States consistent with the aspirations of the international disability rights movement. The provisions went well beyond traditional medical and clinical concerns to embrace the multiple aspects of a quality and valued life. That included the right to live a full life in the community. The CRPD definition of the beneficiaries of the provisions, stated in Article 1, is as follows: “People with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Prior to the CRPD, there were other declarations on the rights of people with disabilities, but they were not binding on States. During 1981, the International Year of Disabled Persons, there were activities geared towards bringing attention to the rights of people with disabilities including conferences, research projects, and policy initiatives. This included the First Founding Congress of Disabled People International, in Singapore from November 30 to December 6. In 1982, the UN General Assembly took a major step towards ensuring effective follow-up to the International Year by adopting, on December 3, 1982, the World Programme of Action concerning Disabled Persons. The Programme restructured disability policy into three distinct areas: prevention, rehabilitation, and equalization of opportunities.

The 1990s were deemed the Decade of Disabled People. In recognition of this, the United Nations passed Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993.  The twenty-two rules were arranged in four chapters – preconditions for equal participation, target areas for equal participation, implementation measures, and the monitoring mechanism – and cover all aspects of life of persons with disabilities.

The CRPD was an important advance on previous initiatives since it required compliance on the part of signatories. Unlike previous initiatives, the CRPD was both a development and human rights instrument as well as a policy instrument that was cross-disability and cross-sectoral. The UN convention has now been signed by 164 countries worldwide and ratified by 180; 94 countries have signed the Optional Protocol to the Convention, and 95 have ratified it. It is therefore legally binding on those states who have ratified it.

The CRPD has taken on even more relevance during the coronavirus pandemic. The Council of Europe (2020) has noted:

Although the ongoing crisis is unprecedented, respect for international human rights standards must be at the heart of state responses to it. In this connection, it is important to remember that Article 11 of the UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by 46 of the 47 member states of the Council of Europe, provides that states shall take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.”

The specific protections outlined above and the antidiscrimination provisions of the CRPD are particularly important during a pandemic given threats to the accessibility of needed supports concern as well among persons with disabilities and their advocates that they will be left behind in accessing lifesaving medical interventions.

9.2.3 Implications of the CRPD for the Right to Science

The Convention marks a “paradigm shift” in attitudes and approaches to persons with disabilities. Persons with disabilities are not viewed as “objects” of charity, medical treatment, or social protection; rather as “subjects” with rights, who are capable of claiming those rights and making decisions for their own lives based on their free and informed consent as well as being active members of society (United Nations. Convention on the Rights of Persons with Disabilities and Its Optional Protocol (PPT) (UN CRPD PPT)).The author argues that for people with disabilities to realize the expansive rights laid out in the CRPD they must rely heavily on the availability of both the products of scientific inquiry as well as scientific research that generates evidence-based practices and policies that lay out successful intervention strategies. Some of the technological and other innovations that have made it possible for individuals to live in communities, to be educated, to be employed, to communicate, and to generally lead lives of meaning include (“What Are Some Types of Assistive Devices” n.d.):

• GPS technology that assists people navigate their environment;

• Augmentative and alternative communication devices;

• Computer software and hardware, such as voice recognition programs, screen readers, and screen enlargement applications, to help people with mobility and sensory impairments use computers and mobile devices;

• Adaptive equipment for a range of functions including eating, bathing, etc.

• Remote monitoring by direct support professionals in order to augment staff;

• Tools such as automatic page turners, book holders, and adapted pencil grips to help children with disabilities to participate in educational activities;

• Smart homes that can control lighting, climate, entertainment systems, appliances, and security and alarm systems;

• Universal architectural design;

• Health monitoring and health aids and prompts;

• Adapted cell phones;

• Mobility aids (electric wheelchairs, prosthetic devices, etc.);

• Hearing aids;

• Cognitive aids, including computer or electrical assistive devices, to help people with memory, attention, or other challenges in their thinking skills.

Rights in the CRPD

• ▪ Right to life, liberty and security of the person

• ▪ Equal recognition before the law and legal capacity

• ▪ Freedom from torture

• ▪ Freedom from exploitation, violence and abuse

• ▪ Right to respect physical and mental integrity

• ▪ Freedom of movement and nationality

• ▪ Right to live in the community

• ▪ Respect for privacy

• ▪ Respect for home and the family

• ▪ Right to education

• ▪ Right to health

• ▪ Right to work

• ▪ Right to adequate standard of living

• ▪ Right to participate in political and public life

• ▪ Right to participation in cultural life

• ▪ Freedom of expression and opinion

In addition to these assistive technologies, there are also rehabilitation technologies that aid people with other than congenital disabilities including (“What Are Some Types of Rehabilitation Technologies,” n.d.):

• Specialized robots help people regain and improve function in arms or legs after a stroke.

• Virtual reality allows people recovering from injury to retrain themselves to perform motions within a virtual environment.

• Musculoskeletal modeling and simulations can help improve assistive aids or physical therapies.

• Transcranial magnetic stimulation (TMS) helps people who have had a stroke recover movement and brain function.

• Transcranial direct current stimulation helps patients to recover movement following a stroke or other conditions.

• Analysis of human motion to gives a detailed picture of a person’s specific movement challenges to guide proper therapy.

The global importance of access to technology for people with disabilities internationally was memorialized at the 71st World Health Assembly (WHA, 2018) during which the Resolution on Improving Access to Assistive Technology was unanimously approved. The Resolution calls on Member States to develop, implement, and strengthen policies and programs to improve access to assistive technology (AT) within universal health coverage. The Resolution was sponsored by Pakistan and requires the World Health Organization (WHO) to prepare a global report by 2021 on access to AT in Member States. The Resolution makes specific mention of the Convention on the Rights of Persons with Disabilities as well as the 2030 Agenda for Sustainable Development as actions taken internationally that underpin and provide a rationale for AT access.

The resolution also recognizes the need to support the application of technology with trained personnel to ensure maintenance, and quality and safety. In addition, it requires Member states to develop national lists of priority products, to carry out research, to develop new products, and to invest in barrier-free environments so that all people who need assistive technology can make optimum use of it.

The provisions of the CRPD, when combined with the human right to science – and the move to establish a right to technology – provide a road map for understanding the ways in which the right can guarantee access to the technology and other scientific advances needed to support an enhanced quality of life for people with disabilities. In other words, taken together, the CRPD and the right science provide both the aspiration and the means for achieving lives of equality and inclusion.

9.3 Evidence-Based Practices

In order to ensure that the treatments, therapies, rehabilitation techniques, technologies, and other interventions applied to maintain or improve functioning of individuals with disabilities are efficacious, scientific proof of such efficacy is considered the gold standard. Evidence is defined as (Singer, Agran, and Spooner, 2017, page 63):

formal objectivist research that uses experimental control to make a case for a causal or functional relation between a practice and its outcomes, that is, to rule out plausible alternative explanations. It is this ruling out of plausible alternatives that is central to the requirement that evidence be drawn from controlled experiments (e.g., randomized control trials, single-case research.

Without the use of evidence to validate such interventions, people with disabilities have been subjected to approaches that are the product of poor science, fads, or wishful thinking and that have ultimately proven to be inefficacious. In some instances, the interventions have continued even after the evidence has proved their inefficaciousness conclusively.

Singer, et al. (2017) assert that the pursuit of unproven practices is the result of “the absence of well-established evidence and an effective interface between scientific researchers and family members and practitioners” (page 67). Examples of the persistence of practices proven over and over not to result in the presumed outcome include Facilitated Communication (FC). According to a review of research on FC, it does not elicit speech from those who previously did not use words to speak via a typing device (American Psychological Association, 2003). The Autism Science Foundation (2019) has denounced a range of unproven treatments for autism including chelation therapy, nutritional supplements, hyperbaric oxygen therapy, secretin injections, and nicotine patch therapy. Patterning is a series of exercises designed to improve the “neurologic organization” of a child’s neurologic impairments and has been used on children with cerebral palsy, Down Syndrome, learning disabilities, and brain injuries. The treatment, according to the American Academy of Pediatrics (1999), is based on an outmoded and oversimplified theory of brain development. Research does not support the claims by proponents that this treatment is efficacious, and its continued use is unwarranted. All of these approaches, though discredited and wasteful, have advocates to this day. While these advocates by and large operate with the best of intentions, they are depriving people with disabilities and their families of the scientific research needed to help them make informed decisions.

9.4 People with Disabilities As Unwitting Scientific Subjects

The use of unproven treatment interventions on people with disabilities seems benign when compared to the multiple instances over decades of people with disabilities being included in scientific experimentation without their knowledge. For instance, in 1949, at Fernald State School (previously the Massachusetts School for the Feeble Minded), seventy-four boys aged ten to seventeen were recruited to join the “Science Club.” They were given special privileges but were also given oatmeal for breakfast with milk laced with radiative tracers. While health dangers were ultimately determined to be minimal (small increase in cancer risk), neither the residents nor their families were given the opportunity to make an informed decision. In another experiment, some of the boys were injected with radioactive calcium. These experiments were approved by the Atomic Energy Commission. Ironically, some of the boys enthusiastically joined the club thinking that the scientists themselves would expose the abuse that went on at the facility (Boissoneault, 2017).

Additional examples of unwitting victims of experimentation were described in an NBC health posting by Associated Press journalist Mike Stobbe (2011). He described one study that began in 1942 that targeted male subjects who were residents of a state mental hospital in Ypsilanti, Michigan. The study involved injecting the men with an experimental flu vaccine and then exposing them to the flu months later. One of the co-authors was Dr. Jonas Salk who later discovered the polio vaccine. Given their disabilities and lack of cognitive acuity, it was not clear that any of them understood what was being done to them. Stobbe also described a second federally funded study in the 1940s that exposed men from mental hospitals in Middletown and Norwich Connecticut to hepatitis. The scientist was Dr. W. Paul Havens Jr. who was a World Health Organization expert on viral diseases.

Finally, Eric Boodman writing for Stat (2015) described an experiment at a Staten Island School for students with intellectual disabilities. The study, which took place from 1963 to 1966 involved feeding the children human feces in milkshakes. The chief scientist argued that he obtained consent from families, but it was not clear whether the families understood what the experiment involved. The experiment eventually led to the discovery that there were at least two types of hepatitis – Type A and Type B.

Scientists involved in these and other studies that took advantage of vulnerable and cognitively compromised individuals argued that the experiments befitted the greater good. For people with disabilities, the RtS should include an assumption that scientific progress is not achieved at the expense of their human rights such as the right to be free from exploitation, the right to health, and the right to life, liberty, and security.

9.5 People with Disabilities As Participants in Scientific Research

With the slogan, “Nothing About Us Without Us,” people with disabilities have increasingly pressed to be included in discussions about research topics and research methods, and to be included a participant in scientific research projects. This kind of involvement has been described as “participant action research” (PAR). This approach is not limited to people with disabilities but has currency with a range of marginalized groups including minorities, indigenous peoples, and LGBTQ+ communities. With respect to PAR for people with disabilities, Balcazar, Keys, Kaplan and Suarez Balcazar (2006) noted four characteristics of this research approach (page 1): (1) the active role individuals with disabilities to define, analyze, and solve identified problems; (2) the opportunities for more accurate and authentic analysis of the social reality of people with disabilities; (3) the resulting awareness among people with disabilities about their own resources and strengths; and (4) the opportunities for improving the quality of life of people with disabilities. Stack and MacDonald (2014), following their review of the PAR literature in developmental disabilities, concluded that: “action research with adults with developmental disabilities holds promise for people with developmental disabilities, their allies within and outside the research, community, and a more inclusive society” (page 90).

The Autism community has been particularly aggressive in advocating for inclusion in research efforts specifically aimed at people on the spectrum. They argue that research has traditionally focused on causes or cures for autism and have primarily targeted children, not adults; and men, to the exclusion of women. An analysis of the 2010 National Institutes of Health autism research agenda found that of $217 million devoted to autism research in that year, only 1.5 percent of the funds went towards research on the needs of autistic adults while only 2.45 percent went towards research on the service-needs of people on the autism spectrum across the lifespan (Autism Self Advocacy Network, 2012; Office of Autism Research Coordination IACC Portfolio Analysis Web Tool, 2012). The Autistic Self-Advocacy Network has argued that people with autism should be included in determining research priorities in order to ensure that topics of concern to the community are addressed including communication strategies, building relationships, employment support, and strategies to manage their support and services.

In addition to the importance of involving people with disabilities in determining research priorities that affect their lives, it is also important to ensure the people with disabilities are included as subjects in longitudinal health and drug trials. People with disabilities have historically been left out of such studies. Without their participation, the results of these important studies will not include important information about any idiosyncratic disease markers and drug interactions affecting people with disabilities. Maya Satabello (2018) makes the case that such inclusion is of particular importance to the growing field of precision medicine that involves treatment initiatives that target the particular genome of individuals or groups of individuals relative to specific health conditions. She makes that point that if people with disabilities are not intentionally included, any scientific advances may be limited and health disparities for this population will be exacerbated.

9.6 Big Data and Artificial Intelligence Digital Divide

9.6.1 Big Data Applications

Big data, or extremely large data sets that may be analyzed to reveal patterns, trends, and associations, especially relating to human behavior and interactions, can be a substantial boon to people with disabilities. In a recent blog by the Data-Pop Alliance (2016) seven areas of research in which big data could be employed to ameliorate specific challenges that they face:

• Voting and Representation – including whether people with disabilities are under-represented of disenfranchised;

• Employment – mapping the availability and location of employment opportunities, monitoring compliance with employment mandates, or assessing the variable that predict employment success;

• Community and Social Media – studying people with disabilities as a network with specific characteristics, using social media to gain access to others with similar challenges, medical issues;

• Accessibility – using data, including crowd-sourcing, to map locations of public places, businesses, lodging, and transportation that are accessible as well as a tool determine compliance with accessibility standards;

• National and International Programs – comparing countries based on their implementation of national and global targets, such as the CRPD;

• Education – There are a variety of descriptive uses of data, in particular relating to the proportion of children with disabilities who are included in the education system (either in specially designed programs or integrated into other programs), to observing what opportunities exist for them to receive education and identifying gaps and issues in the education system. Data can also be used for creating education material, such as using innovative approaches to digitize books or studying the effectiveness of various teaching tools and methods;

• Awareness and Advocacy – using big data on the topics above to raise awareness, to monitor progress toward global goals, and to influence disability policy reform.

With respect to using big data to monitor international progress, The Internet Governance Lab recently co-sponsored “Data, Disability and Development: Innovative Approaches to Monitoring and Evaluating CRPD Implementation and Disability-Inclusive Development using Big Data Analytics and Text Mining.” This session took place at the 11th Conference of States Parties to the UN Convention on the Rights of Persons with Disabilities (CRPD) at the United Nations in New York, in 2018. Topics included international mapping of accessibility to political life, using smartphone and online applications to crowd-source data on accessibility to cities, and development a categorization model to automate the analysis of CRPD state party reports.

Big data can also pose challenges to people with disabilities. Specifically, many of the data sets used to develop a range of technologies, medical interventions, or to assess or evaluate quality of life and well-being of the general population, fail to include data from or regarding people with disabilities. Reasons for the absence of such data includes lack of access to people with disabilities, privacy concerns, communication issues, and lack of knowledge regarding the value this data can provide. Without representation in these data sets, the specific needs and rights of individuals with disabilities will be overlooked, or worse, directly contravened.

Sharona Hoffmann (2017) argues that big data may lead to employment discrimination in respect of people with disabilities. She argues that the Americans with Disabilities Act (ADA) should be amended in response to the big data phenomenon “in order to protect individuals who are perceived as likely to develop physical or mental impairments in the future” (page 777). She suggests that employers can obtain medical data about employees not only through the traditional means of medical examinations and inquiries, but also through the nontraditional mechanisms of social media, wellness programs, and data brokers. “Information about workers’ habits, behaviors, or attributes … can be used to create profiles of undesirable employees … to exclude healthy and qualified individuals” whose profiles suggest that they may be vulnerable to future disabilities or illnesses. Her argument could also extend to screening for insurance eligibility or bank loans if such screening shows certain markers for disease and disability as revealed through big data.

9.6.2 Artificial Intelligence

Like big data, artificial intelligence and machine learning promise enormous benefits for people with disabilities whether through GPS tracking, voice recognition, or products like digital personal assistants such as Alexa that can remotely control a range of household functions (e.g., lights, music, alarms, etc.). However, the algorithms that drive the machine learning behind such devices do not routinely include data on people with disabilities. As a consequence, voice recognition devices may not recognize deaf speakers, people with cerebral palsy, or people with cognitive limitations. Facial recognition programs may not recognize people with Down Syndrome or facial dysplasia. Trewin (2018), who is an accessibility analyst for IBM, argues that unless the data that underpins the algorithms behind elements of AI such as facial, speech, and gesture recognition, they will not be accessible to those left out of the data. There are several reasons why this data is not included in such algorithms including privacy concerns, legal restrictions, and lack of accessibility to accurate data. The possible discrimination that these algorithms may visit on a range of marginalized and disadvantaged groups is a growing and complicated issue and cannot be thoroughly examined here. However, suffice it to say that, as Trewin (2018, pages 6–7) asserts: “For systems that will make or influence decisions affecting human lives, it is critical that a broad range of user stakeholders are involved in development, including people with disabilities who can help developers to think through the possible implications of the technology, and to test the technology’s performance on edge cases and under-represented populations.”

9.6.3 Digital Divide

Being able to navigate the Internet is facilitated by a variety of devices including computers, tablets, and smart phones and is increasingly becoming critical to modern life. Being a part of social media, shopping, communicating with friends, getting directions, and ordering food are all increasingly being done online. However, a recent Pew poll conducted in 2016 (Anderson and Perrin, 2017), Americans with disabilities were about three times as likely as those without a disability to say they never go online (23 percent versus 8 percent). Further, adults with disabilities are roughly 20 percentage points less likely to say they subscribe to home broadband and own a traditional computer, a smartphone, or a tablet.

The survey also found that people with disabilities have fewer devices capable of connecting with the Internet. One-in-four respondents said they had high-speed Internet at home, a smartphone, a desktop or laptop computer and a tablet, compared with 42 percent of those who report not having a disability. For those able to get onto the Internet, respondents with disabilities said they spent less time connected than their nondisabled peers. Finally, people with disabilities indicated that they had less confidence in their ability to negotiate the Internet.

Unfortunately, many assistive technologies can be expensive. Screen readers, text-to-speech software, and Augmentative and Alternative Communication (AAC) devices can all cost more than $1,000 each, and not everyone knows how to find grants in their countries to secure such devices. These factors have prevented many people with disabilities from gaining access to technological advancements, leaving only a select population with the ability to take advantage of them. Digital exclusion “means fewer employment, educational, social and political opportunities, lack of access to confidential financial and health information, and a general inability to fully participate in all aspects of society” (Feingold, 2013, paragraph 3) Advocates for people with disabilities argue that digital inclusion is a civil right.

9.7 Conclusion

This discussion of the application of the right to science to people with disabilities is not meant to be exhaustive but hopefully highlights the complexity and interrelationship of the issues involved. Science and the products of science are critical to the realization of the human rights of people with disabilities and to their inclusion in society. However, the conduct of science also poses challenges and obstacles to people with disabilities when they are excluded from decisions about scientific priorities, the conduct of scientific research, and the design of technology. The following are some brief recommendations aimed at increasing awareness in the general public and the scientific community regarding the needs and aspirations of a critical segment of the global population:

• Introduce disability issues into engineering and other curricula to ensure that product development includes access considerations.

• Include people with disabilities in design decisions for products, equipment, clinical approaches and other scientific endeavors that will affect their inclusion in their communities and their ability to manage their own lives.

• Support evidence-based practices normed on disability populations.

• Include people with disabilities in data used to identify markers for specific illnesses.

• Explore informed consent policies for people with intellectual disabilities in order to ensure that they are neither exploited nor excluded from scientific studies.

• In developing nations with few resources, prioritize low cost solutions.

• Include access to science as part of international monitoring of the CRPD by the Special Rapporteur and the Committee on the Rights of People with Disabilities.

• Develop longitudinal surveys to track the well-being of people with disabilities and to identify gaps in their access to science-based supports.

10 Science in the Times of SARS-CoV-2

Stjepan Orešković and Sebastian Porsdam Mann

10.1 Introduction

The post–World War II world has seen huge progress in scientific research. The generators have been large-scale projects funded by national governments, big business and global corporations, individual talent, and initiatives creating thousands of technology spin-offs and innovative start-ups. The role of organized knowledge in society has never been more important and the impact of STEM (Science, Technologies, Engineering, Mathematics) on people’s everyday lives is growing. New scientific and technological fields as diverse as biotechnology and nanotechnology, gene therapy and pharmacogenomics, membrane technology, neural computing, nanotechnology, and ICTs in general are creating a basis for a society in which the “creation, dissemination, and utilization of information and knowledge has become the most important factor of production.”¹

Consequently, the quantity and quality of scientific inputs and outputs, as measured by the Nature Science Index,² have increased. Applied science is flourishing. Its outputs are tangible and evident in the areas of science, technology development, and innovation (STDI), as measured by the Global Innovation Index.³ IBM researchers estimate that 90 percent of the world’s data have been created in the last two years: more data than was created in the entire previous history of the human race.⁴

For the first time in the history of science, including the history of data science itself, we are witnessing a paramount attempt to integrate all existing and possible sources of data, information, and knowledge, to confront a single phenomenon: the SARS-CoV-2 pandemic.

The long-lasting linear growth of science and its impact on societies beginning in the aftermath of WWII received a major structural blow on January 7, 2020, in the city of Wuhan. Public health authorities identified a novel coronavirus. Wuhan was placed under quarantine within days and, on January 31, the World Health Organization declared a public health emergency.

The figures⁵ of more than 130 million cases and more than 2.8 million deaths globally convey neither the inevitable final death toll and suffering, nor the overall effect of COVID-19 on mortality. The Institute for Health Metrics and Evaluation (IHME) projection, that was based on current projections scenario, by July 1, 2021 we will see 4,4 millions COVID-19 deaths globally⁶ The broader disruption caused by COVID-19 could result in many additional deaths that are not directly attributable to the spread of the virus. Declines in households’ economic wellbeing and changes of prioritization in access to health services for non-COVID illnesses will cause many additional deaths yet to be recorded. Credible and reliable estimates of the overall effect of the COVID-19 epidemic on health outcomes will not be available before the end of the year 2021⁷. and long-lasting problems from COVID-19 make it even more important to reduce the spread of the disease⁸.

As the SARS-CoV-2 virus started to spread in humans and the COVID-19 epidemics/pandemics emerged, global society rapidly experienced a deluge of controversial if not contradictory data concerning scientific facts, governmental evidence-based policies, as well as health and security intelligence.⁹ In a global pandemic situation, data are an essential tool for making decisions concerning the allocation of resources as well as for measuring the effectiveness of interventions. Many significant and basic facts about COVID-19 are still missing, including the most important one: how many people have been infected so far? Without reliable virological testing data, we cannot develop epidemiological projections and models accurately.¹⁰ Without having exact data on the total number of people infected we also cannot precisely calculate the case-fatality rate (CFR) (the percentage of patients with the disease (cases) who die from the condition), which likely ranges widely with covariates.

This is an important problem. Knowing the number of deaths during a period of the pandemic is not enough. Moreover, in many cases, we cannot even rely on simple and standard measures such as the mortality rate which countries are reporting to the World Health Organization. We need these measures to calculate excess deaths/excess mortality rates. These rates compare the number of deaths during a period of the pandemic with the average number of deaths during the same period in previous years, thus unmasking potential hidden effects.¹¹.¹² Thus, in the period between 26 January and 3 October 2020, the US registered 360,000 deaths in excess of the five-year average,¹³ of which 209,000 cases were confirmed to be due to COVID-19. The same trend applied for all G-8 countries, although following a different cycles, different seasonal patterns and strong difference in intensity.

Figure 10.1 Excess mortality during COVID-19 Pandemic: Deaths from all causes compared to previous year, all ages in G-8 Countries

Not all excess deaths should be directly attributed to the COVID-19 pandemic. Lives will be lost because of interactions with other illnesses, the necessary reduction in the quality and magnitude of medical care for everyone else implied by the vast resource drain of COVID-19, as well as factors such as domestic violence. These facts stress the importance of the distinction between death “with” or “from” COVID-19.

Notwithstanding the profound uncertainty and questionable credibility of the available data, specific numbers and statistics are being presented by scientists, the media, and governments with the appearance of conviction and certitude. However, incomplete or incorrect data may create or contribute to false senses of security, or alternatively to anxiety and even social hysteria. Far-fetched, exaggerated or manipulated information derived from questionable data have already generated serious scientific and policy mistakes in relation to the appropriate separation and restriction of movement of individuals exposed to a contagious disease (sc. quarantine, self-quarantine, and isolation.) Such measures, as well as their society-wide analogues of lockdown and social distancing, are known from previous experience to be the single most effective set of public health measures. By “flattening the curve,” these tried-and-tested methods reduce the burden incumbent on healthcare systems at any specific time point, thereby preventing the most serious collateral iatrogenic damage resulting from the pressure on overburdened and under-resourced medical staff and facilities. However, without reliable data specifically relevant to the COVID-19 pandemic, efficacious and evidence-based social distancing policies cannot be established, but must rather be approximated. The severity of the ethical implications of this lack of data integrity and availability may be appreciated by considering their direct translatability into lives not saved, avoidable illnesses, and unnecessary public resource drainage.

This chapter demonstrates the utility and validity of applying a human rights lens to topical and important issues in science and society through an in-depth case study of the current SARS-COVID-2 pandemic. After setting out the relevant background, recent developments in the scientific fight against the pandemic are considered in light of the provisions of Article 15 ICESCR and 27 UDHR, which enshrine the human right to enjoy the benefits of scientific progress and its applications. This right is relevant to several aspects of the scientific process, from funding, data acquisition, hypothesis selection and experimentation all the way through to publication, knowledge sharing and the implementation of resulting knowledge in the spheres of policy and technology.¹⁴

The second half of the chapter focuses on a highly pertinent yet little-discussed dimension of scientific research: the speed at which it is conducted. The analysis proceeds by way of analogy to the central thesis of Nobel Laureate Daniel Kahneman’s summary of decades of research into heuristics and biases, Thinking, Fast and Slow.¹⁵ It is suggested that the dichotomy between a “fast,” instinctive and affective cognitive process and its “slow,” logical, and deliberative counterpart also accurately characterizes two idealized, diametrically opposed and extreme approaches to the scientific process. Nowhere is this distinction of greater practical significance than in the contemporary response to the SARS-CoV-2 pandemic.

The ongoing threat to human life and progress, the constant attention from the media and the public, as well as the possibility of glory for major advances, all affect scientists and their work. While this enables practical cooperation and reduces the timeframe for possible breakthroughs to such an extent as to offer hope to individuals currently suffering under the burden of the disease, these same factors likely introduce the very heuristics and biases that the scientific method is supposed to rule out or minimize. From an abstract, collective and long-term perspective, nothing beats “slow,” curiosity-driven and methodologically unimpeachable research based on a rigorous understanding of the scientific method. Yet the price paid for greater certainty is greater latency, and in the case of the SARS-CoV-2 pandemic, time is already running short for hundreds of thousands of infected individuals.

Building on this discussion, the importance of trust in science and in evidence are underlined, and the argument advanced that the “right to science lens” provides a useful framework for identifying the elements necessary for such trust, and offers guidance as to how it is best achieved. We argue that this can be seen in practice through a comparison of the disparate impact of the virus in different countries. We suggest three broad factors which may account for much of this difference: the presence of scientifically informed leadership with respect for slow science and methodological rigor; societal trust in both science and in political and public health leadership; and a lower degree of income and wealth inequality. The RtS, as elucidated in the Committee on Economic, Social, and Cultural Rights’ authoritative General Comment No. 25 (2020),¹⁶ which in turn relies on relevant provisions of the 2017 UNESCO Statement on Science and Scientific Researchers,¹⁷ and elsewhere in this volume, provides useful and workable guidance as to how the development of these factors can be encouraged.

10.2 Societies and Science: the Good, the Bad, and the Ugly

In Blueprint: The Evolutionary Origins of a Good Society,¹⁸ Nicholas M. Christakis has collected rich evidence from various disciplines to show that historically, whole scientific fields have focused on the dark side of our biological heritage. “In other words, we humans can be awful – prone to selfishness, tribalism, hatred, and violence,” writes Christakis. “But, equally, we are good, prone to love, friendship, cooperation, and teaching … we evolved these capacities, and the good must necessarily have outweighed the bad, in order for us to live as a social species.”¹⁹ It is therefore important not to forget the “human” in “human rights.”

“Because [science] is a discipline given to objective fact-finding addressed by hypotheses and using inductive methodologies, it appears by its reliance on empiricism to exclude all consideration of value-laden issues,” wrote Richard Pierre Claude, one of the first and foremost commentators on the right to science. “Whether this view stands up to scrutiny or not, it remains obvious that science is a discipline pursued by human beings.”²⁰ One implication is that the mixed traits Christakis identifies as hallmarks of the human experience – selfishness and tribalism, but also cooperation, teaching and friendship – may influence the motivation and conduct of scientists and through their actions eventually shape the content, quality, and focus of scientific debate and progress.

In the second part of this chapter, we suggest this dynamic is visible in the context of scholarship on the SARS-CoV-2 pandemic. The desire to produce helpful and useful science, which falls squarely within the “good” part of human nature, motivates meticulous adherence to procedures and protocols designed to maximize scientific validity and minimizes any possibility of harm. Science carried out in this way may be termed “slow” science. The desire to help those who are suffering now may tempt less scrupulous scientists to rush publication and cut methodological corners, however. Likewise, the prospect of honor, fame and professional recognition that follow major breakthroughs, perhaps combined with a fear of being scooped, may subconsciously influence even the most methodical and meticulous scientists, editors, and commentators. Where these kinds of motivations significantly influence methodology, we might speak of “fast” science.

The choice or balance between fast and slow science has serious consequences for the fulfillment of the human right to enjoy the benefits of scientific progress and its applications. Indeed, much of the normative content of the right to science aims at preventing the kinds of extraneous influences on scientific method, which characterize fast science. The following section sets the stage for the analysis of fast and slow science by exploring the elements of the right to science in the context of ongoing efforts to combat the SARS-CoV-2 virus. It begins by examining several positive factors, including the high degree of international scientific cooperation, medical altruism, and funding available for scientific research, which represent the “good” in human nature and scientific conduct. In contrast, the disproportionate impact of the pandemic on the already disadvantaged, as well as the evidence of disparate treatment and outright racial discrimination, demonstrate the reality of “bad” factors. Finally, the worldwide reliance on data for scientific progress in general, and on location and contact tracing for COVID-19 positive individuals in particular, renders data science particularly susceptible to dual-use concerns. Where these concerns are warranted, the likely negative impacts are so widespread and so invasive that we may speak of truly repugnant or “ugly” effects.

10.3 The Good: Science As a Public Good

Human rights, and in particular the right to science, are not only a fundamental human value and a normative imperative for good society. As recognized in paragraph 8 of the CESCR’s General Comment No. 25, the benefits of science extend beyond the “material results of the applications of scientific research” to include “the scientific knowledge and information directly deriving from scientific activity” as well as “science’s role in forming critical and responsible citizens who are able to participate fully in a democratic society.”²¹

When integrated into basic societal rules and principles, human rights are strong generators of economic development, social progress, and international cooperation and assistance. We visualize this relationship below using comparative data connecting human rights protection scores and GDP per capita. The countries included in the analysis are G-7 member states plus Russia, Brazil and the country with the lowest relative number of cases and 0 deaths – the best overall success in controlling the pandemic.

The “good” of state investment in human rights-relevant factors may be exemplified at the level of international governmental aid. The US State Department and USAID are the largest donors globally, providing nearly $274 million in annual emergency health and humanitarian assistance to countries in need, in addition to funding already provided to multilateral organizations such as the World Health Organization²² and UNICEF.²³ In the context of the current pandemic, there are several examples of collaborative and altruistic State behavior. For example, the German university hospital in Essen-Holsterhausen has admitted COVID-19 patients from France; Albania has issued a group of thirty doctors and nurses to neighboring Italy; and France has responded forcefully to the need for more blood donations. The Chinese corporation Alibaba has donated 500,000 test kits and one million face masks to the US, and several Japanese clothing manufacturers and retailers have donated another million protective face masks to American hospitals.²⁴

Figure 10.2 Human Rights Score vs. GDP per capita 1990–2017. “The ‘Human Rights Score’ aims to measure how a government protects its citizens’ physical integrity, by taking into account torture, government killing, political imprisonment, extrajudicial executions, mass killings and disappearances”.

Sources: World Bank, Schnakenberg and Fariss (2014) Fariss (2019). OurWorldData.org/cascade-or-rights/

Such examples of altruistic and collaborative behavior cannot erase the fact, however, that most of the benefits of scientific progress and its applications are unequally distributed. As scientific knowledge has become a crucial factor in the production of wealth, its international distribution has become steadily more inequitable. This is due to structural asymmetries among countries, regions and social groups, and between races and the sexes. What distinguishes poor people or underdeveloped countries from their richer counterparts is not only that they control fewer assets, but also that they do not create, shape, and enjoy as many benefits of scientific knowledge.²⁵

This reality demonstrates the importance of international cooperation, an essential element of the right to science. Article 15(4) ICESCR states that, “[t]he States Parties to the present Covenant recognize the benefits to be derived from the encouragement and development of international contacts and co-operation in the scientific and cultural fields”.²⁶ Moreover, it illustrates importance of scientific freedom, another essential element recognized in Article 15(3). Without scientific freedom, the safe exchange of medical personnel, technological equipment, and scientific knowledge cannot be guaranteed.

Several steps have already been taken to curb the Coronavirus pandemic. These involve controlling and changing human behavior; searching for drugs and testing vaccines; stimulating the economy,; and creating datasets and collecting information from sources as diverse as those about population genetic and public health, traffic controls, and GPS signals, social media sites, purchase transaction records, as well as the climate. In the face of the pandemic, science has been recognized as the strongest and most legitimate instrument to pursue the ideals of a safer life and improved overall human conditions.

This promise of science is, however, conditional on the broad distribution of scientific information and the growth and dissemination of evidence-based knowledge (cf. ICESCR Article 15(2)).²⁷ Scientists are expected to search for drug therapies and vaccines and deliver solutions under unprecedented time pressure, potentially undermining these conditions.²⁸

10.4 The Bad: Inequality and Access to Science

As the ability to manipulate abstractions and data becomes ever more important for the attainment of societal ends, we should remember that a knowledge society is not necessarily a good society.²⁹ Neoclassical economic theory equates development with GDP growth that can be measured through the lens of an aggregate production function, relating “relates the total output of an economy to the aggregate amounts of labour, human capital and physical capital in the economy, and some simple measure of the level of technology in the economy as a whole.”³⁰ This model fails to provide an adequate picture even of economic development, as it entirely ignores externalities including, but not limited to, social costs, environmental impacts, and income inequality.³¹

It is not surprising that such an approach to society at times creates fear and reluctance to adopt new technologies. Much of the current inequality both within and between societies can be traced to technical innovations introduced at first to benefit only a privileged minority.³² These are partially to blame for the creation of a global society in which, according to a Pew Research Center analysis, the vast majority of the world’s population (4.4 billion people – 71% of the global population of 6.2 billion) lives on a budget that falls well short of the poverty line in advanced economies ³³.³⁴ The most recently available data analysis finds that the global middle class encompassed 54 million fewer people in 2020 than the number projected prior to the onset of the pandemic and the number of poor is estimated to have been 131 million higher because of the recession³⁵.

Since socioeconomic determinants such as education and poverty are deeply interrelated with health, this stark inequality will be exacerbated as the COVID-19 pandemic plunges the global economy into a synchronized recession the likes of which has not been witnessed since the Great Depression. The rise in the number of people infected by COVID-19 in Africa and South Asia, for example, is creating new economic and social shocks that threaten to deepen global inequalities, especially affecting the people living in rural areas or overcrowded megalopolises lacking access to basic health and social services.³⁶

Where the obligations imposed on States under the right to science have been met, societies are better prepared for the type of emergency responses necessary in a global pandemic, including effective means of tracing, testing, and quarantining. Article 2 ICESCR provides that

States Parties must take steps, to the maximum of their available resources, for the full realization of the [right to science]. While full realization of the right may be achieved progressively, steps towards it must be taken immediately or within a reasonably short period of time. Such steps should be deliberate, concrete and targeted, using all appropriate means, including the adoption of legislative and budgetary measures.³⁷

Moreover, “maximum available resources”³⁸ should be understood to include resources available through international cooperation. Where countries have not met this standard despite good faith attempts to comply with their duty of progressive realization for reasons of resource scarcity, it is frequently the international community’s failure to live up to their own obligations which is to blame.

Over the course of the last two decades, developmental economists have attempted to build alternative growth models responsive to the fact that some people are more favored by their legislators and governments than others are. Adherents of the “Unified Growth Theory,” for example, have expounded important theoretical perspectives and breakthroughs by studying the interplay between growth and political³⁹ as well as social institutions.⁴⁰ The new conception of economy envisaged is a global view of systems of production that have fundamental implications for our everyday material and mental reality.⁴¹ Unified Growth Theory was designed to resolve the conflict between growth designed to satisfy the interests of profit and the interests of the majority of the population.⁴²

Figure 10.3 The worsening economic outlook following the emergence of COVID-19 entails an increase of over three percentage points in LDC poverty headcount, with more than 33 million additional people living in extreme poverty.

Source: https://unctad.org/en/pages/newsdetails.aspx?OriginalVersionID=2356

10.5 The Bad II: Discrimination

Human Rights Watch has identified forty questions to guide a rights-respecting response to the COVID-19 crisis. These principally target the needs of groups most at risk, including people living as ethnic minorities and/or refugees, religious groups, elderly and disabled people,⁴³ children and women, and members of the LGTBQ+ community.⁴⁴ Racially discriminatory treatments related to the COVID-19 pandemic have occurred repeatedly around the world. There have been reports of discrimination in employment and housing directed at Africans and people of African descent throughout China, and attempts were made to forcibly test Africans in the Guangdong province.⁴⁵ A significant increase of racist incidents against Asian Australians has been recorded in Australia, ranging from racial slurs to physical assault committed against women (62 percent).⁴⁶ Racial discrimination also plays a part in the pattern of victim-blaming that occurs when inequality widens for communities of color. An exclusive focus on individuals’ risky behavior is typically adopted, trivializing the importance of socioeconomic determinants of health in the interpretation of the high mortality rates among people of color.

Analysis of the death toll of COVID-19 furthermore reveals that the poor, uninsured, and members of minority groups are the most affected. The rate of COVID-19-related deaths among Black and Latino residents of Chicago and New York is more than twice the Caucasians rate. Similar highly disproportionate rates are measured in other densely populated cities and neighborhoods in the USA.⁴⁷ The need to take public transportation to get to work and/or the presence of pre-existing health problems radically increase exposure to the virus and are necessarily related to socioeconomic status. This is not specific to the USA. In the United Kingdom, black males are 4.2 times and black females 4.3 times more likely to die from a COVID-19-related death than Caucasians.⁴⁸

These disproportionate burdens on already marginalized groups are a particularly egregious violation of the basic human rights principles which underlie the right to science. Unlike the duty of progressive realization, which applies to most obligations derived from this right, there are no excuses under international human rights law for allowing such discrimination to happen. Article 2(2) ICESCR is clear on this point: “The States Parties to the present Covenant undertake to guarantee that the rights enunciated in the present Covenant will be exercised without discrimination of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.”⁴⁹ The CESCR’s General Comment No. 25 reminds us that “States Parties are under an immediate obligation to eliminate all forms of discrimination against individuals and groups in their enjoyment of ESCRs.”⁵⁰ The obligation to remedy discrimination is absolute, cannot be limited, and obtains even in emergencies and situations involving the total destitution of the State.

One implication is that States Parties must address socioeconomic determinants of exposure. This can happen, for example, by establishing temporary, less crowded institutions (care homes, prisons, schools) or by providing financial incentives not to commute using public transportation (i.e. furlough programs and programs enabling those most in need to stay at home altogether without losing their jobs by subsiding their employers). States could disseminate evidence-based advice on social distancing, hygiene and personal protective equipment, especially among those most in need and least able to otherwise obtain it.

10.6 The Ugly: Dual Use, Harm, Coronavirus Capitalism, and the Dignity of the Individual

A major menace to scientific freedom arises from the interaction between digital technologies and capitalism – specifically, the threat of “surveillance capitalism.”⁵¹ This mutant strain of capitalism works by providing free services to citizens in exchange for their personal data, enabling services providers to monitor users’ online behaviour with or without their explicit consent.

Although some of these data are applied to service improvement, the rest are declared as a proprietary behavioural surplus, fed into advanced manufacturing processes known as “machine intelligence,” and fabricated into prediction products that anticipate what you will do now, soon, and later. Finally, these prediction products are traded in a new kind of marketplace that I call behavioural futures markets. Surveillance capitalists have grown immensely wealthy from these trading operations, for many companies are willing to lay bets on our future behavior.⁵²

Why has surveillance capitalism been so successful over the last decade or so? In part, it is because we have lost support from our real-world institutions:

whether it’s health care, the educational system, the bank … It’s just a tale of woe wherever you go. The economic and political institutions right now leave us feeling so frustrated. We’ve all been driven in this way toward the internet, toward these services, because we need help. And no one else is helping us. That’s how we got hooked.⁵³

Coronavirus Capitalism is an even newer term coined to cover a broader set of structural changes resulting from the pandemic.⁵⁴ The analogy of “surveillance capitalism” is applicable to the role of digital technologies in the context of the COVID-19 pandemic: technologies employed by governments around the world are aimed at identifying how infected people behave, where they move, with whom they socialize, but not only for the purpose of monitoring self-isolation or enforcing quarantines. Governments are demanding extraordinary new surveillance powers⁵⁵ intended to contain the virus’ spread.

Significant problems related to data security may arise from private corporations storing large quantities of consumers’ personal data. Instead of looking to invest their resources in boosting testing, unchecked power-seeking governments might end up using the COVID-19 surveillance technologies to normalize data gathering on individuals for the purpose of social and political control.⁵⁶ This prospect would not comply with the European Data Protection Board (EDPB)’s guidelines, which state that restrictions of freedom during the pandemic are acceptable only to the extent that they are consistent with narrowly defined purposes, limited timeframes, and the recommendation that “pseudonymisation, encryption, non-disclosure agreements and strict access role distribution, access role restrictions as well as access logs should be employed.”⁵⁷

For example, machine-readable QR codes, which are typically used to store URLs or other information to be scanned by smartphone cameras, have been used to monitor citizens and alert authorities about the movements and actions of individuals who have tested positive for SARS-CoV-2 in China, Russia, and Hong Kong. Closed-circuit television has been deployed to track such individuals in South Korea. In Israel, citizens’ cell phone location data are used for quarantine control purposes by the government⁵⁸.

The EU currently proposes to track citizens using Bluetooth. Computer science and machine learning experts from eight European nations are developing the Pan-European Privacy-Preserving Proximity Tracing Project,⁵⁹ which aims to enable technologies to alert users to the presence of nearby individuals who have tested positive for the virus. Moreover, the Massachusetts Institute of Technology is developing new platforms using existing mobile technologies to enable privacy-preserving contact tracing. The aim of these platforms is to enable health care providers to download the names of those who have been physically close to infected individuals. Algorithms developed by data scientists will furthermore be able to integrate data from different sources to forecast precise community-level infection risks.⁶⁰ All these examples are the result of the theory that the interest of public health prevails over privacy rights and interests when the demand for processing sensitive private information increases due to severe threats⁶¹ to survival among the general population.

The Joint Civil Society Statement, issued by more than one hundred national and international civil society organizations, “urge[s] governments to show leadership in tackling the pandemic in a way that ensures that the use of digital technologies to track and monitor individuals and populations are carried out strictly in line with human rights.”⁶² Proposals that would invade privacy, deter free speech, and disparately burden vulnerable groups are not acceptable, the Electronic Frontier Foundation argues, and suggests three questions to be answered in every situation when decisions are being made to give greater surveillance powers to the government:

1. 1) Would the proposal work?

2. 2) Would it excessively intrude on privacy and freedoms?

3. 3) Are there sufficient safeguards?⁶³

These misgivings show that the kind of surveillance characterizing Coronavirus Capitalism is liable to misuse. The problem is familiar from pre-Corona contexts, but the emergency powers sought by governments to combat COVID-19 are more extensive and invasive. The problem arises from the fact that the same technologies – surveillance, tracking and tracing, identification, and contact using ICTs – which are capable of producing vast benefits (as the case of successful contact tracing in South Korea shows) are also capable of producing great harm through bad faith, selfish or even hostile uses. In the case of invasive individual surveillance, it is not hard to see that a wealth of information concerning individuals may be connected, amassed and analyzed. Nor is it difficult to appreciate that much of this information is likely to be sensitive and may give rise to neglect, discrimination, or even persecution, for data subjects, as well as unjust enrichment and undemocratic influence for those who wield the power of the resulting knowledge. Given the sheer scale of data involved, and the ease with which systems meant for emergencies may be repurposed for continued use, the danger of dual use may well be one of the ugliest problems currently facing societies.

The problem of dual-use surveillance also raises the issue of respect for human dignity. Dignity has a special meaning in international human rights law, where it serves as the foundational value from which human rights are derived.⁶⁴ Although a detailed definition is outside the scope of this chapter, dignity may be said to involve respect for individual autonomy and desires, balanced against interference with those of others, and entitlement to acknowledgement and respect as an agent whose life and interests have inherent value. Thus, dignity is violated whenever individuals are treated merely as tools or objects for the achievement of some purpose. Such treatment respects neither the equal rights of all humans nor their cognitive and affective capacities. The constellation of nonconsensual and exploitative practices which make up Coronavirus Capitalism not only undermine the interests of individuals to maintain the privacy necessary for self-development and the cultivation of relationships; they also fail to offer a reasonable degree of informational freedom.

10.7 The Ugly II: Executive Distrust of Science

Not every country has reacted in the same manner during the pandemic, with the same level of ethical, social, and scientific responsibility, transparency, and evidence-based policies. Indeed, there are already indicators of significant differences in the transfer of knowledge and use of evidence-based policy between the highly developed EU countries as well as the USA. Whether members of high-risk groups, such as the elderly and people with preconditions, will live or die depends on the response of world leaders to the idea of evidence-based policy and the right to enjoy the benefits of scientific progress. Politics of denial and limited public access to evidence-based information and independent scientific sources on the virus’s spread have already contributed to the loss of hundreds of thousands of lives. In some countries, responses from heads of state have been marked by distrust of science, cover-ups, and ad hominem attacks on doctors who sounded the alarm at the beginning of the outbreak. There have been “predictions” that the virus would disappear like a miracle one day and dismissals of the disease as a hoax fantasy and a little flu.⁶⁵ Manipulation, exaggeration and conspiracy theories on the origins of SARS-Cov-2 are rampant, spreading faster than the virus and likewise producing deadly effects. Some of the most widespread are that:

• The virus has escaped from a Chinese laboratory in Wuhan

• The US military brought the virus to Wuhan

• 5G networks spread the virus

• The virus was created by Bill Gates who wants to make billions on the vaccine.

Social scientists are trying to chart the path of disinformation in the same way that epidemiologists are tracking the transmission of a new virus, with a special focus on so-called “superspreaders” whose actions cause significantly more viral dissemination than others.⁶⁶ Some politicians have held political rallies, kissing supporters and promoting an aversion to scientific inquiry and public health institutions. One aspect of populist manipulation of reports and official figures, which has puzzled researchers, is the reported mortality rate in many countries being far below those measured, expected, or projected for comparable economies, societies or health care systems. For example, Russia is positioned in upper tier of the Europe region in terms of number tests per million population( 830 926 tests / 1 million people – 121 300 000 tests in total while Denmark leads the way with 4 476 378 tests / 1 million people – 25 996 859 tests in total) However, Russia is standing, as of this writing, at 4,5 million reported cases and 99.000 deaths, resulting in relatively low 31,258 cases per million, ⁶⁷ and even lower level of deaths per million if compared to most of G-8 average, (Russia reports 683 deaths per million compared to UK reporting 1861 deaths per million, Italy, 1827, USA 1705, Germany 921)⁶⁸ . This is a country with an underfunded and vertically disconnected health care system, and in which no satisfactory explanations for such superior performance are obvious.

Though fairly common, national responses aimed at obscuring the true extent of the virus’s impact, constitute clear and fundamental violations of no less than three of the core minimal obligations of the right to science. The CESCR explicitly provides, in paragraph 52 of its General Comment No. 25, that the following obligations are “core,” such that no government may be excused for failing to fulfil them unless they demonstrate exhaustion of available domestic and international resources in bona fide attempts at fulfillment (paragraph 51).

Core obligations related to the [right to science] require States, inter alia, to:

Adopt mechanisms aimed at aligning government policies and programs to the best available, generally accepted scientific evidence;

Adopt mechanisms to protect people from the harmful consequences of false, misleading and pseudoscience-based practices, especially when other ESCRs are at risk;

Promote accurate scientific information and refrain from disinformation, disparagement, or deliberate misinforming of the public, so as to erode citizen understanding and respect for science and scientific research.⁶⁹

10.8 Science: Fast and Slow

Unfortunately, a rigorous approach to scientific method is a slow and ponderous process. Trials must adhere to strict safety and statistical standards. They have to obtain ethical review. Their results need to be confirmed by other trials and discussed in open scientific fora. Before they can be published, they typically undergo peer review. As a result, the scientific process operates on a temporal resolution of years and decades. Yet the Coronavirus cannot be persuaded to wait, and thousands need a cure, vaccine or treatment now. As a result, the natural, social and behavioral sciences are all under great pressure to answer difficult questions quickly. Whether consciously or subconsciously, methodological niceties and research credibility may be sacrificed or neglected in the process, leaving research or policy papers open to criticism.

A good example is the statistical bias which arises from attempts to understand the share of people who have contracted the coronavirus. Basic but fatal problems arise from the misinterpretation and miscalculation of epidemiological concepts. The second most important cause of bias is that a key metric, the number of deaths caused by coronaviruses, tends to lag. Although many regions publish daily death counts, these are typically underestimates and suffer from unrepresentative sampling and daily variability. The sampling-variability issue is exacerbated by the fact that polls or studies with extreme results are more likely to get reported on (“publication bias”).⁷⁰

Consequently, we cannot rely completely on the data that partly inform the 500+ research papers on COVID-19 published daily. The primary cause for this explosion in publications is the adoption of new scientific practices, stimulating scientists to share pre-print research directly online, without formal peer-review. These new practices have engendered a fair amount of skepticism. Like fast food, hastily compiled junk science⁷¹ can be deleterious for health. Conflicts and mixed messages among scientists are symptomatic of a rushed approach and have stymied efforts to tackle the most pressing issues.⁷²

The scientific knowledge and individual and collective experience we are amassing over the course of the SARS-CoV-2 pandemic will be the basis for the knowledge of tomorrow. Ideally, this knowledge and experience will inform the creation of new tools and techniques which in turn will help us collectively control future epidemics. Some will argue that the conduct of the scientific process – from generating hypotheses to designing research and evaluating hypotheses – should be a value-neutral exercise. However, conducting science in accordance with the requirements of the eponymous right means engaging with the concerns of the public, rather than shutting these out. In the words of Isabelle Stengers, scientists ought to behave like the

“thinking, rational brain of humanity” and refuse to allow their expertise to be used to shut down the concerns of the public, or conversely, to spread the belief that scientific progress is inevitable and will resolve all of society’s problems. Rather, science must engage openly and honestly with an intelligent public and be clear about the kind of knowledge it is capable of producing.⁷³

The sometimes completely unrealistic societal expectations from science and technologies are vividly illustrated by the current pandemic.⁷⁴ The biomedical research pipeline begins with rigorous safety checks on small experimental groups during Phase 1; expands to groups of a few hundred in Phase 2; thousands in Phase 3; and only then may Phase 4 trials be initiated. Months normally pass between phases so that researchers can review the findings and obtain approval to proceed to subsequent phases; the process of bringing novel pharmaceuticals can thus extend over years or decades. Since 1992, the US Food and Drug Administration’s development and drug approval standards and procedures include a track for the accelerated approval of antiretroviral drugs. Originating from the need to enable rapid access to HIV/AIDS medication, the FDA’s accelerated approval track can be “applied to promising therapies that treat a serious or life-threatening condition and provide therapeutic benefit over available therapies.”⁷⁵ The influence of the “fast” process can be illustrated by reference to the incredible statistic that nearly 30,000 of the COVID-19 articles published in 2020 were preprints — between 17% and 30% of total COVID-19 research papers Journals rushed to get COVID-19 articles through peer review. MedRxiv COVID-19 preprints appeared in peer-reviewed journals after a median review time of 72 days, twice as fast as preprints from the server on other topics⁷⁶. The US National Library of Medicine’s trial registry, ClinicalTrials.gov, presently records 5.248 ongoing or completed COVID-19 studies. The number of studies already recruiting patients is exceptional, at 2562 current studies.⁷⁷ This pace is unprecedented in the history of science and medicine. Nevertheless, both the SARS-CoV-2 virus and the resultant COVID-19 disease are novel biological phenomena. Despite the fact that there only few vaccines for COVID-19 approved by either the FDA⁷⁸ or the European Medicines Agency (EMA),⁷⁹ unscrupulous companies are attempting to profit from the pandemic through illegally marketed and scientifically untested products falsely claimed to be efficacious against the disease.

A famous example of this phenomenon is hydroxychloroquine, a sometime anti-malarial drug publicly promoted by US President Trump⁸⁰. This drug was the subject of two major papers published in The Lancet and New England Journal of Medicine, the premier medical journals of the United Kingdom and US, respectively. The studies were both based on a database purportedly derived from the medical records of 96,000 COVID-19 patients. Their publication “had considerable impact, halting clinical trials of malaria drugs around the world and providing reassurance about the risks of blood pressure medications taken by millions of patients.”⁸¹

Based on suspicions about the source and accuracy of this database, more than a hundred academics signed an open letter to the editor of The Lancet requesting an independent validation of the study and details of the supporting evidence.⁸² Both studies were subsequently retracted when it emerged that Surgisphere Corporation, the proprietors of the database, had refused access to its full contents to independent reviewers.⁸³ Under normal circumstances, the editorial and research standards in these journals is so high that retractions or allegations of serious mistakes or omissions are rare, especially in cases of studies, such as these two, authored by senior professionals from prestigious institutions. They would take months or years to conduct and go through multiple rounds of analysis and review. However, these studies went through the entire research pipeline from data analysis through submission to publication in little over five weeks. To the extent that such a hastily crafted paper would be unlikely to pass editorial and peer review in less pressured times, this story illustrates the impact that the “fast” process can exert, even in the best medical journals.

The difficult history of HIV treatment and the deployment of vaccines against the H1N1 outbreak in 2009 illustrate that even when tools have been available, they have not been equally available to all. In the long run, therapeutic drugs, together with vaccines, might change the fight against COVID-19 too.⁸⁴ One potential source of such optimistic and promising vaccine-development is that such “speculations” have caused the stocks of companies developing vaccines to surge and more than double since late February, despite some of these companies having never successfully brought a single product to market. For politicians, it is an attempt to invest in the potential surge of public support ahead of elections. Developing such huge expectations from science may be wreaking potentially serious damage to the reputation and credibility of science as a source of knowledge, directly undermining the principles underlying the right to science.

10.9 Discussion: the Importance of Trust in Science and Evidence and How to Build It

The global spread of the SARS-CoV-2 virus and COVID-19 pandemic is an unexpected opportunity to see the principles of the right to science, and the effects of their absence, in action. It is also an opportunity to measure the quality and the pace of the implementation of scientific and applied science recommendations found in the ICESCR, General Comment No. 25, and the 2017 UNESCO Statement on Science and Scientific Researchers, which is the source of several of the normative definitions of terms used by the CESCR in its General Comment.

Figure 10.4 The relation between rate of deaths, SARS-CoV-2 testing frequency and expenditures on health per capita in the G-8 countries as compared to Vietnam – the most successful country in managing COVID/19 pandemics.

Source: author’s composite from various databases.

Figure 10.4 shows that only two countries among the most affected developed countries have experienced relatively positive outcomes of their attempts at prevention and viral control. Japan and Germany were well prepared, highly organized, and exceptionally effective with respect to prevention and tertiary intervention policies. Germany has since led the way in Europe with large-scale testing for COVID-19, collecting more than 50 million samples (600 per million) since the start of the crisis. Although the country as of the time of writing ranks seventh globally for the number of confirmed cases – exceeding 2.9, million infections (34.144 per million) – the fatality rate is much lower than those of other developed countries at 921 deaths per million. Japan represents an even more interesting and successful case with close to 500.000 infection cases (3.784 per million) and 9.195 deaths (73 deaths per million) so far recorded.

Among non-Western countries, success stories in handling the novel coronavirus outbreak include only highly developed countries such as South Korea, Taiwan and Hong Kong. However, there is one exception to this rule. Vietnam, a country of 97 million inhabitants, had not reported a single coronavirus-related death by June 9, 2020 and as of that time reported just 2.620 confirmed cases (27 per million!) and 0,4 deaths per million (total of 16 deaths!). Vietnam is a low–middle income country (2.185 USD per capita in 2017) with a low-spending healthcare system (130 USD per capita in 2017) and only 8 physicians per 10,000 population. However, unlike the case of Russia, there are several explanatory factors lending credence to Vietnam’s claims. Fresh experience with the previous SARS and H5N1 epidemics allowed Vietnam to respond with immediacy, effectiveness, and transparency. The country relied on just four solutions, all of them cost-effective, to combat the virus: speedy implementation of a national lockdown; strategic testing (26.519 test per 1 million population)⁸⁵ using WHO-approved techniques and testing only those likely to be infected); contact tracing through apps; and effective public communication campaigns. Vietnam was also the first country in the world to be cleared of the SARS outbreak in 2003.

Based on these experiences, the most important factor influencing effectiveness of overall national policy appears to have been an educated approach to and respect for facts, evidence, and science from the national leadership as well as critical respect for international institutions.⁸⁶

Learning from the scientific evidence and evidence-based practice in study of the effectiveness of non-pharmaceutical interventions against spread of SARS-CoV-2 is an imperative. Control of the pandemic while using combinations of movement restrictions, physical distancing, hygiene practices, and intensive case and contact detection and management proved effective in China, Singapore, and South Korea. However, the New Zealand government’s strategy is unique because it represents the most effective strategy in high-income democratic setting, if measured by outcomes, while employing scientific evidence and technical expertise in controlling COVID-19 with total of 2501 cases and 25 cumulative deaths (500 cases and 5 deaths per 1 million population).

Technical advisory group appointed by the Ministry of Health developed a strategy comprising of combination of intensive case and contact detection and management, physical distancing, movement restrictions, hygiene practices, and highlighting transmission hotspots and targeting community testing. It has been one of the keys to the success of its SARS-CoV-2 elimination and control strategy. It comprised of the following several science-led ⁸⁷sub-strategies as described in Nature Immunology paper:

• Quick and radical lockdowns. During the first wave of the pandemic (March 2020) the government implemented quick and radical lockdowns including travel restrictions and border closures. The speed and intensity of the New Zealand’s governmental response to limit the epidemic is unprecedented internationally⁸⁸ representing the fastest trajectory to reach the highest country score in the Government Response Stringency Index⁸⁹.

• Timely and targeted testing. A key feature of the success in eliminating SARS-CoV-2 was moving early (January 31, 2020) to rapidly develop and implement in-house laboratory RT–PCR (PCR with reverse transcription) tests for SARS-CoV-2. The initiative was developed by regional diagnostic laboratories and academic scientists. Total number of 1.9 million people have been tested (380.000 per million population) significantly lower percentage of population tested as compared to the G-8 countries (UK 1.871.000 per million, USA 1.219.000 per million)

• Viral genomics. Viral genomics was also critical to New Zealand’s successful public health response, with genomic sequencing being used as a key tool for understanding and limiting the spread of COVID-19

• Integrating genomics with epidemiological and modeling data. Local transmission chains and regional spread were able to be tracked and audited in real time

• Geographic information. When combined with geographic information, the pathways of viral spread, including from the global population, domestically and at the community level, were more easily revealed

• Superspreading events. A special focus of control was directed to identify superspreading events and trigger focused interventions.

• Transparent and credible governmental policy. Timely and decisive national leadership of New Zealand’s by prime minister Jacinda Ardern was evidence-informed combining, rigorous case detection, isolation, contact tracing, and quarantine measures with population education and engagement.

These are the very qualities which national leaders are obliged to demonstrate, without excuses or qualifications, as a bare minimum to fulfill their duties under international human rights law. Thus General Comment No. 25 includes in its list of core minimal obligations (paragraph 52) the following:

• Ensure access to those applications of scientific progress that are critical to the enjoyment of the right to health and other ESCRs;

• Foster the development of international contacts and co-operation in the scientific field, without imposing restrictions on the movements of persons, goods and knowledge beyond those which are justifiable in accordance with article 4 of the Covenant.

• Develop a participatory national framework law on the RPEBSPA, which includes legal remedies in case of violations, and adopt and implement a participatory national strategy or an action plan for the realization of the RPEBSPA, which includes a strategy for the conservation, the development and diffusion of science;

• Adopt mechanisms aimed at aligning government policies and programs to the best available, generally accepted scientific evidence;

• Ensure that people have access to basic education and skills necessary for the comprehension and application of scientific knowledge and that scientific education in both public and private schools respect the best available scientific knowledge.⁹⁰

Where individuals are informed and knowledgeable in scientific matters and methods, their trust in results derived from science is greater. Where government officials, and especially national leaders, are informed and knowledgeable, and act in accordance with scientific evidence and human rights, citizen trust in both their leadership and in science itself increases. This is explicitly recognized in paragraph 54 of General Comment No. 25:

A clear benefit of scientific progress is that scientific knowledge is used in decision-making and policies, which should, as far as possible, be based on the best available scientific evidence. States should endeavor to align their policies to the best scientific evidence available. They should, furthermore, promote public trust and support for sciences throughout society and a culture of active citizen engagement with science, in particular through a vigorous and informed democratic debate on the production and use of scientific knowledge, and a dialogue between the scientific community and society.⁹¹

10.10 Conclusion

Trust in evidence-based policy and the right to science is a significant explanatory factor of the sharp contrast in the figures for deaths per 100,000 persons and case-fatality between Japan Japan (7.25/1,9%), Canada (62.06/2.3%), Russia (67,55/2,2%)⁹², Germany (92.64/2.7%), France (143.47/2.0%), the US (169.07./1.8%), Italy (181.87/3.0%) and the United Kingdom (191,02/2.9%) respectively attributed to the SARS-CoV-2 virus.⁹³ . That helps us better understanding the governmental policies and social behavior determining not only the number of number of cumulative cases⁹⁴ but also in some cases capacity to organize effective vaccination policy⁹⁵ The extent of such trust is not only a question of how educated leaders are or how many scientists are directly involved in government or administrations.⁹⁶ It is also a question of the scientific organizational and social experience with epidemics, behavioral habits, cultural values, and respect for the institutional setup within and between nations.

This suggests and illustrates the significance of whether or not policy in general, and scientific policy in particular, follows the facts, data, and guidelines, as well as how much we adhere to the idea of a right to science. Given the general acknowledgement of the necessity and importance of science in the fight against COVID-19, it is an interesting question whether the respect for science generated by the episode is enough to counter the much-maligned pre-pandemic rise of “alternative facts” and “fake news” in the aftermath of the pandemic. Whatever the eventual outcome, the case of the SARS-CoV-2 virus pandemic clearly demonstrates that the right to science is equally challenging to implement and just as important for nations of the world as the idea of science itself. However, this chapter’s analysis of the elements of the right to science and their ability to enhance societal trust in science indicate that attempting to meet that challenge is a good idea.