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“Technologies of Reflexivity”: Generating Biopolitics and Institutional Risk to Supplement Global Public Health Security

Published online by Cambridge University Press:  06 December 2017

Mark L FLEAR
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Abstract

Critiques of global public health security (GPHS) and proposed solutions tend to overlook the potential of the individuals and groups that are subject to and governed by GPHS – “the governed” – to contribute their “on the ground” knowledge and experience to decision-making in order to improve regulatory responses. This article argues for the development of a more reflexive approach as a way of ensuring the epistemic integration of these knowledges with the scientific-technical knowledges that currently dominate decision-making processes. I identify human rights as the conceptual lens that is most likely to enable reflexivity by the governed and regulators, and understanding and communication between them. The governed can use perceived or actual breaches of human rights to articulate “on the ground” knowledges as institutional risks to reputation and standing and, in turn, threaten the production and legitimation of organisational identity, socio-political orders and projects of rule. The particular sensitivity of regulators to these risks could compel epistemic integration. This more reflexive approach to GPHS promises to improve the knowledge base, efficacy, accountability and legitimacy of decision-making at multiple levels: WHO, EU, national and “on the ground”.

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Articles
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European Journal of Risk Regulation , Volume 8 , Special Issue 4: Special Issue on the EU Public-Health-Security Nexus , December 2017 , pp. 658 - 685
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© Cambridge University Press 

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Footnotes

*

Queen’s University Belfast. Many thanks to the participants in the seminar “Germs, Bioterrorism and Chemical Attacks: Internal and External EU Security Perspectives”, Brussels, 21–22 November 2016, where the earliest draft of this article was presented, and to James Revill for his comments as discussant. Thanks to the editors of this special issue, the peer reviewers and to Richard Ashcroft, Colm O’Cinneide, Markus Frischhut, Colin Harvey and Anne-Marie McAlinden for their comments and suggestions.

References

1 For discussion see, for example, Jasanoff, S, The Ethics of Invention: Technology and the Human Future (Norton & Co, 2016)Google Scholar.

2 WHO, The World Health Report 2007: A Safer Future: Global Public Health Security in the 21st Century (WHO, 2007), 1. Emphasis added.

3 Avian influenza or A/H5N1.

4 Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome. For discussion, see Elbe, S, “Should HIV/AIDS be Securitised? The Ethical Dilemmas of Linking HIV/AIDS and Security” (2006) 50(1) International Studies Quarterly 119 CrossRefGoogle Scholar.

5 Harlem Brundtland, G, “Global Health and International Security” (2003) 9(4) Global Governance 417 CrossRefGoogle Scholar; Fidler, D, SARS, Governance and the Globalisation of Disease (Palgrave Macmillan, 2004)CrossRefGoogle Scholar; Gostin, LO, “Pandemic Influenza: public health preparedness for the next global health emergency” (2004) 32(44) Journal of Law, Medicine and Ethics 565 CrossRefGoogle ScholarPubMed; Heymann, D, “Evolving Infectious Disease Threats to National and Global Security” in L Chen and others (eds), Global Health Challenges for Human Security (Harvard University Press, 2003)Google Scholar; Prins, G, “AIDS and Global Security” (2004) 80(5) International Affairs 931 CrossRefGoogle Scholar.

6 Black defines regulation as “the intentional use of authority to affect behaviour of a different party according to set standards, involving instruments of information-gathering and behaviour modification” ( Black, J, “Critical Reflections on Regulation” (2002) 27 Australian Journal of Legal Philosophy 1)Google Scholar.

7 International Health Regulations (WHA58/2005/REC/1, 23 May 2005).

8 WHO, Report of the Ebola Interim Assessment Panel (WHO 2015), 13. Emphasis added.

9 This requires all Member States to behave with appropriate responsibility towards the international community in the adoption of travel and trade restrictions. Moreover, this provision also requires that Member States are to inform the WHO of additional measures and to provide a scientific rationale and justification that can be shared among Member States (Art 43(3)). The WHO may request a Member State to reconsider the application of additional measures (Art 43(4)).

10 WHO, supra, note 8, 12. Emphasis added.

11 Ibid, 20. Emphasis added.

12 Council of Europe, The Handling of the H1N1 Pandemic: More Transparency Needed (CoE, 2010), Draft Resolution A1. See further Council of Europe, Resolution 1749, 24 June 2010; Council of Europe, Recommendation 1929, 24 June 2010. Also see Cohen, D and Carter, P, “WHO and the Pandemic Flu ‘Conspiracies’” (2010) 340 British Medical Journal c2912 CrossRefGoogle ScholarPubMed.

13 Council of the EU, Council Conclusions on Lessons Learned from the A/H1N1 Pandemic – Health Security in the European Union, Brussels, 13 September 2010.

14 European Parliament Resolution of 8 March 2011 on Evaluation of the Management of H1N1 Influenza in 2009-2010 in the EU (2010/2153(INI)) OJ C 199E/7.

15 Resilience has been described as the “capacity of a system to absorb disturbance and reorganise while undergoing change so as to still retain essentially the same function, structure and feedbacks, and therefore identity” – see Folke, CSR and others, “Resilience Thinking: Integrating Resilience, Adaptability and Transformability” (2010) 15(4) Ecology and Society 20, available at <www.ecologyandsociety.org/vol15/iss4/art20/>. Emphasis addedCrossRefGoogle Scholar.

16 WHO, supra, note 8, 5. Emphasis added.

17 Prominent recent examples of this being: Davies, SE and others, Disease Diplomacy: International Norms and Global Health Security (John Hopkins University Press, 2015)CrossRefGoogle Scholar; Bennett, B and Davies, SE (eds), “Special Issue: Global Health Governance of Public Health Emergencies” (2017) 25(2) Medical Law Review 181 CrossRefGoogle Scholar. On the lack of engagement with citizen participation in public health more generally, see Flear, ML, Governing Public Health (Hart, 2015)Google Scholar, Ch 1 “Context, Approach and Overview”, 15–20.

18 See, for example, Cloatre, E, Pills for the Poorest (Palgrave Macmillan, 2013)CrossRefGoogle Scholar.

19 Rationality is described as “a way of doing things that … [is] oriented to specific objectives and that … [reflects] on itself in characteristic ways”: Rose, N and others, “Governmentality” (2006) 2 Annual Review of Law Society and Science 83, 84 CrossRefGoogle Scholar.

20 Where there is reference to the EU, the focus is on the EU’s regulatory order, which is one level of the multi-level system of governance. Within that system the EU level interacts with a range of other regulatory orders including those at the national level. See further Hooghe, L and Marks, G, Multilevel Governance and European Integration (Rowman & Littlefield, 2001)Google Scholar.

21 Flear, supra, note 17; Frischhut, M and Greer, S, “EU Public Health Law and Policy – Communicable Diseases” in TK Hervey and others (eds), Research Handbook on EU Health Law and Policy (Edward Elgar, 2017)Google Scholar; Hervey, TK and McHale, JV, European Union Health Law (Cambridge University Press, 2015)CrossRefGoogle Scholar, especially Ch 15 “Risk: tobacco, food, alcohol”.

22 See Bennett and Davies, supra, note 17.

23 For discussion, see Flear, supra, note 17.

24 As discussed in modernisation theory: Beck, U, Risk Society: Towards a New Modernity (Sage, 1986)Google Scholar; Giddens, A, The Constitution of Society (Polity, 1984)Google Scholar; Giddens, A, Modernity and Self-Identity (Polity, 1991)Google Scholar; Luhmann, N, Observations on Modernity (Stanford University Press, 1998)CrossRefGoogle Scholar. Foucault did not have a theory of reflexivity, but for such an addition to his thinking see Butler, J, The Psychic Life of Power (Stanford University Press, 1997)CrossRefGoogle Scholar.

25 Hacking, I, The Taming of Chance (Cambridge University Press, 1990)CrossRefGoogle Scholar. Also see Desrosières, A, The Politics of Large Numbers: A History of Statistical Reasoning (Harvard University Press 1998)Google Scholar; Espeland, WN and Stevens, ML, “A Sociology of Quantification” (2008) 49(3) European Journal of Sociology 401 CrossRefGoogle Scholar; Porter, T, Trust in Numbers: The Pursuit of Objectivity in Science and Public Life (Princeton University Press, 1995)Google Scholar.

26 Rose, N and Miller, P, “Political Power Beyond the State: Problematics of Government” (1992) 43(2) British Journal of Sociology 172, 178 CrossRefGoogle Scholar.

27 Foucault, M, Security, Territory, Population: Lectures at the Collège de France, 1977–1978 (Palgrave Macmillan, 2007) 48–49 Google Scholar.

28 ibid 47.

29 Dean, M, Governmentality: Power and Rule in Modern Society, 2nd edn (Sage Publications, 2009)Google Scholar.

30 For discussion of “technology” see Flear, supra, note 17, Ch 1 “Context, Approach and Overview”, 6, 20–22.

31 In general see Ewald, F, “Insurance and Risk” in G Burchell and others (eds), The Foucault Effect. Studies in Governmentality (University of Chicago Press, 1991)Google Scholar; Ewald, F and Utz, S, “The Return of Descartes’ Malicious Demon: An outline of a philosophy of precaution” in Baker, T and Simon, J (eds), Embracing Risk: The Changing Culture of Insurance and Responsibility (University of Chicago Press, 2002)Google Scholar. More generally see, for example, Ericson, RV, Crime in an Insecure World (Polity, 2007)Google Scholar; Zedner, L, “Fixing the Future? The Pre-emptive Turn in Criminal Justice” in B McSherry and others (eds), Regulating Deviance: The Redirection of Criminalisation and the Futures of Criminal Law (Hart, 2009)Google Scholar.

32 Jasanoff, S, “The Idiom of Co-Production” in S Jasanoff (ed), States of Knowledge: the Co-production of Science and the Social Order (Routledge, 2004)CrossRefGoogle Scholar; Jasanoff, S and Kim, S-H, Dreamscapes of Modernity: Sociotechnical Imaginaries and the Fabrication of Power (University of Chicago Press, 2015)CrossRefGoogle Scholar.

33 Reubi, D, “A Genealogy of Epidemiological Reason: Saving Lives, Social Surveys and Global Population” (2017) doi:10.1057/s41292-017-0055-2 CrossRefGoogle Scholar.

34 Brown, T and others, “Critical Interventions in Global Health: Governmentality, Risk and Assemblage” (2012) 102(5) Annals of the Association of American Geographers 1182 CrossRefGoogle Scholar; Larner, W and Walters, W, Global Governmentality: Governing International Spaces (Routledge, 2004)CrossRefGoogle Scholar; de Larrinaga, M and Doucet, MG, Security and Global Governmentality (Routledge, 2010)CrossRefGoogle Scholar.

35 WHO Alma-Ata Declaration on Primary Health Care 1978; WHO Ottawa Charter for Health Promotion 1986; Adelaide Recommendations on Healthy Public Policy 1988; Rio Political Declaration on Social Determinants of Health 2011.

36 Or more accurately “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health” found in Art 12 International Covenant on Economic, Social and Cultural Rights (16 December 1966, entered into force 3 January 1976) 993 UNTS 3. In the European regional human rights system, Arts 11 and 13 European Social Charter (Revised) (3 May 1996, entered into force 1 July 1999, 2151 UNTS 277, ETS 163) are important in that they relate to the treatment of illness. Specifically, Art 13 provides that “anyone without adequate resources has the right to social and medical assistance”. Art 11 provides that “everyone has the right to benefit from any measures enabling him to enjoy the highest standard of health attainable” including through measures which “remove as far as possible the causes of ill-health” and “prevent as far as possible epidemic, endemic and other diseases, as well as accidents”. As for the European Convention on Human Rights and Fundamental Freedoms (4 November 1950, entered into force 3 September 1953) ETS 5, signature states are required to take reasonable steps to protect life under Art 2 on the right to life (Osman v UK [1999] 1 FLR 193).

37 The right to adequate food, clothing and housing, the right to freedom from hunger, and the right to environmental and industrial hygiene are found in Arts 11 and 12 ICESCR. Other rights, including the right to liberty and security of the person, freedom from coerced labour, liberty of movement, freedom of thought, conscience and religion and freedom from discrimination, are found in Arts 4, 8, 9, 12, 18 and 26 International Covenant on Civil and Political Rights (16 December 1966, entered into force 23 March 1976) 999 UNTS 171 (ICCPR). In the European regional human rights system, the Art 2 European Convention on Human Rights and Fundamental Freedoms (4 November 1950, entered into force 3 September 1953) ETS 5 on the right to life provides that signature states are required to take reasonable steps to protect life (Osman v UK [1999] 1 FLR 193). For discussion see Tobin, J, The Right to Health in International Law (Oxford University Press, 2012)Google Scholar; Toebes, B and others (eds), Health and Human Rights in Europe (Intersentia, 2012)Google Scholar.

38 In particular through, Committee on Economic, Social and Cultural Rights, “General Comment No 14: The right to the highest attainable standard of health (art 12)” (11 August 2000) UN Doc E/C.12/2000/4, which spells out the content.

39 Art 168(3) TFEU.

40 According to the Explanatory Notes for the CFR in respect of Art 35 – see Explanations Relating to the Charter of Fundamental Rights (2007/C 303/02) OJ C 303/17.

41 See also discussion of “known unknowns” (those risks that we know we don’t know about) and “unknown unknowns” (those risks that we don’t know that we don’t know about) in Zedner, supra, note 31.

42 More generally, see Ericson, RV and Doyle, A, Uncertain Business: Risk, Insurance and the Limits of Knowledge (University of Toronto Press, 2004)Google Scholar; Lakoff, A, “From Population to Vital System” in A Lakoff and SJ Collier (eds), Biosecurity Interventions: Global Health and Security in Question (Columbia University Press, 2008)CrossRefGoogle Scholar; O’Malley, P, Risk, Uncertainty and Government (Glasshouse Press, 2004)Google Scholar.

43 Douglas, M and Wildavsky, A, Risk and Culture: An Essay on the Selection of Technical and Environmental Dangers (University of California Press, 1982)Google Scholar; Luhmann, N, Risk: A Sociological Theory (de Gruyter, 1993)Google Scholar.

44 In general see Fidler, DP and Gostin, LO, Biosecurity in the Global Age: Biological Weapons, Public Health, and the Rule of Law (Stanford University Press, 2007)Google Scholar; Hinchcliffe, S and Bingham, N, “Securing Life: the emerging practices of biosecurity” (2008) 40(7) Environment and Planning A 1534 CrossRefGoogle Scholar; Lentzos, F, “Rationality, Risk and Response: A Research Agenda for Biosecurity” (2006) 4(1) BioSocieties 453 CrossRefGoogle Scholar.

45 A focus noted as transferred from the United States’ Centre for Disease Control to the WHO and globally by one of its experts, see Ashraf, H, “David Heymann – WHO’s Public Health Guru” (2004) 4(12) The Lancet Infectious Diseases 785 CrossRefGoogle Scholar. For the roots of this approach, see Henderson, DH, “Surveillance Systems and Intergovernmental Cooperation” in S Morse, Emerging Viruses (Oxford University Press, 1993)Google Scholar.

46 S Collier and A Lakoff, “Vital Systems Security” (2007) ARC Working Paper No 2, 3. Emphasis added. Also see Lakoff, A, “Real-time Biopolitics: The actuary and the sentinel in global public health” (2015) 44(1) Economy and Society 40 CrossRefGoogle Scholar; Roberts, SL and Elbe, S, “Catching the Flu: Syndromic Surveillance, Algorithmic Governmentality and Global Health Security” (2017) 48(1) Security Dialogue 46 CrossRefGoogle Scholar.

47 Dean, supra, note 29, 226. Emphasis added.

48 This approach stems in large part from Ferguson, NM and others, “Strategies for Containing an Emerging Influenza Pandemic in Southeast Asia” (2005) 437 Nature 209 CrossRefGoogle ScholarPubMed. Also see Longini, IM and others, “Containing Pandemic Influenza at the Source” (2005) 309 Science 1083–1087 CrossRefGoogle ScholarPubMed.

49 Weinberg, J, “Responding to the Global Challenge of Infectious Disease” in M McKee and others (eds), International Co-operation in Health (Oxford University Press, 2001)Google Scholar.

50 See “Global Health Security Initiative”, available at <www.ghsi.ca/english/index.asp>.

51 Fidler, DP and Gostin, LO, “The New International Health Regulations: An Historic Development for International Law and Public Health” (2006) 34(1) Journal of Law, Medicine and Ethics 85, 86 CrossRefGoogle ScholarPubMed.

52 Art 2 IHR 2005. Emphasis added.

53 On securitisation see Balzacq, T, “Preface” in Securitisation Theory: How Security Problems Emerge and Dissolve (Routledge, 2011)Google Scholar; de Larrinaga, M and Doucet, MG, Security and Global Governmentality (Routledge, 2010)CrossRefGoogle Scholar.

54 Arts 5 and 13 and Annex 1 IHR, and Art 6 and Annex 2 IHR.

55 For example: WHO, Pandemic Influenza Risk Management (WHO 2017)Google Scholar.

56 Art 57(1) IHR 2005 states the IHR and EU Treaties “should be interpreted so as to be compatible”. Art 3(4) states that States Parties have “the sovereign right to legislate and to implement legislation in pursuance of their health policies”, and in so doing they should uphold the IHR.

57 Recital 6 Decision 1082/2013/EU on serious cross-border threats to health and repealing Decision 2119/98/EC OJ L 293/1.

58 These are defined by Art 3(g) Decision 1082/2013/EU, ibid, as “a life- threatening or otherwise serious hazard to health of biological, chemical, environmental or unknown origin which spreads or entails a significant risk of spreading across the national borders of Member States, and which may necessitate coordination at Union level in order to ensure a high level of human health protection”.

59 Art 168(5) TFEU.

60 Art 6(a) TFEU – and it must be of “added value” in order to comply with the principles of subsidiarity and proportionality under respectively Art 5(3)–(4) TEU.

61 Art 168(7) TFEU provides that EU action shall “respect the responsibilities of the Member States for the definition of their health policy…”.

62 Recital 1 Decision 1082/2013/EU, supra, note 57.

63 European Commission, Programme of Cooperation on Preparedness and Response to Biological and Chemical Attacks [Health Security], G/FS D(2001) GG; European Commission, Strengthening Chemical, Biological, Radiological and Nuclear Security in the European Union – An EU CBRN Action Plan, COM(2009) 273 final; European Commission, Staff Working Document Bridging Security and Health: Towards the Identification of Good Practices in the Response to CBRN Incidents and the Security of CBR Substances, SEC(2009) 874.

64 Established by Regulation (EC) 851/2004 establishing a European Centre for Disease Prevention and Control OJ L 142/1.

65 Decision 2119/98/EC on a network for the epidemiological surveillance and control of communicable diseases OJ L 268/1.

66 Art 8(1) Decision 1082/2013/EU, supra, note 57. Emphasis added.

67 Based on Art 168(2) TFEU and Art 168(7) TFEU. See the documents referred to in supra, note 63 and European Commission, “Interim Document”: Technical Guidance on Generic Preparedness Planning for Public Health Emergencies, 2005. The guidance includes checklists “as a guide that may be used to assist in the development, revision or assessment of comprehensiveness of preparedness plans” (ibid, 3) and facilitates the “inter-operability of national plans, mainly by the creation of co-ordination mechanisms and analysis and communication tools that enhance co-operation between key Member States and Commission players” (ibid, 2, emphasis added).

68 European Commission, Pandemic Influenza Preparedness and Response Planning in the European Community, COM(2005) 607 final, 8 (emphasis added). Also see European Commission, Communication on Strengthening Coordination on Generic Preparedness Planning for Public Health Emergencies at EU Level, COM(2005) 605 final.

69 “EU Response to the Ebola Outbreak”, available at <ec.europa.eu/europeaid/regions/africa/west-africa/ebola-response_en>, accessed 19 October 2017.

70 European Commission, The EU’s Response to Help Fight the Ebola Outbreak in West Africa, MEMO/14/520, 5 September 2014.

71 In addition to the references to Beck and Giddens, supra, note 24, see Beck, U, World Risk Society (Polity, 2009)CrossRefGoogle Scholar; Giddens, A, The Consequences of Modernity (Polity, 1990)Google Scholar.

72 Power, M, The Risk Management of Everything: Rethinking the Politics of Uncertainty (DEMOS, 2004)CrossRefGoogle Scholar.

73 Jasanoff, supra, note 32, 3. See, more generally, Feyerabend, PK, Against Method (Verso, 1993)Google Scholar; Kuhn, T, The Structure of Scientific Revolutions, 2nd edn (University of Chicago Press, 1970)Google Scholar; Latour, B, Science in Action: How to Follow Scientists and Engineers through Society (Harvard University Press, 1988)Google Scholar.

74 Black, J, “The Emergence of Risk-Based Regulation and the New Public Risk Management in the United Kingdom” (2005) Public Law 512 Google Scholar; Power, M, The Audit Society (Oxford University Press, 1997)Google Scholar.

75 See Dean, supra, note 29.

76 For discussion, see Rushton, S, “Global Health Security: Security for Whom? Security from What?” (2011) 59 Political Studies 779 CrossRefGoogle Scholar.

77 Fidler, D, SARS, Governance and the Globalisation of Disease (Palgrave Macmillan, 2004)CrossRefGoogle Scholar; Poku, NK and Whiteside, A, Global Health and Governance: HIV/AIDS (Palgrave Macmillan, 2004)Google Scholar.

78 European Commission, White Paper, Together for Health: A Strategic Approach for the EU 2008-2013, COM(2007) 630 final, 2. Emphasis added.

79 Council of the EU, Council Conclusions on the Implementation of the EU Health Strategy – Outcome of Proceedings, Brussels, 20 November 2008.

80 European Commission, supra, note 78, 3.

81 ibid 3.

82 European Commission, supra, note 78, 8–9. Emphasis added. See further European Commission, Combating HIV/AIDS within the European Union and in the Neighbouring Countries, 2006–2009, COM(2005) 654; European Commission, EU Strategy for Action on the Crisis in Human Resources for Health in Developing Countries, COM(2005) 642.

83 Art 26(2) TFEU defines the internal market as “an area without internal frontiers in which the free movement of goods, persons, services and capital is ensured…”.

84 “Health strategy”, available at <ec.europa.eu/health/strategy/policy/index_en.htm>.

85 Cf Black, J, “The Emergence of Risk-Based Regulation and the New Public Risk Management in the United Kingdom” (2005) Public Law 512 Google Scholar.

86 This effect serves to remove or mask phenomena from comprehension of their “historical emergence and from a recognition of the powers that produce and contour [them]” – see Brown, W, Regulating Aversion (Princeton University Press, 2006)CrossRefGoogle Scholar 15. Emphasis added.

87 For discussion, see Adams, V (ed), Metrics: What Counts in Global Health (Duke University Press Books, 2016)CrossRefGoogle ScholarPubMed.

88 WHO, supra, note 8, 20.

89 ibid.

90 Foucault, M, Society Must Be Defended (Penguin Books, 2004) 7 Google Scholar.

91 Fee, E and Krieger, N, “Understanding AIDS: Historical Interpretations and the Limits of Biomedical Individualism” (1993) 83 American Journal of Public Health 1477 CrossRefGoogle ScholarPubMed.

92 Kidd, IJ and Carel, H, “Epistemic Injustice and Illness” (2017) 34(2) Journal of Applied Philosophy 172, 176 CrossRefGoogle ScholarPubMed. Emphasis added.

93 For instance, Moon, S and others, “Will Ebola Change the Game? Ten Essential Reforms Before the Next Pandemic. The Report of the Harvard-LSHTM Independent Panel on the Global Response to Ebola” (2015) 386 The Lancet 2204 CrossRefGoogle ScholarPubMed.

94 Gostin has been a particularly active proponent: Gostin, LO, “Global Health. Meeting Basic Survival Needs of the World’s Least Healthy People: Toward a Framework Convention” (2008) 96(2) Georgetown Law Journal 331 Google Scholar. The WHO has adopt just one international convention: Framework Convention on Tobacco Control (21 May 2003, entered into force 27 February 2005) 2301 UNTS 166. More recently see Gostin, LO, “Our Shared Vulnerability to Dangerous Pathogens” (2017) 25(2) Medical Law Review 185 CrossRefGoogle ScholarPubMed.

95 Cf consideration of social justice in pandemic planning in: “Bellagio Statement of Principles”, available at <www.unicef.org/avianflu/files/Bellagio_Statement.pdf> and <www.bioethicsinstitute.org/web/page/905/sectionid/377/pagelevel/3/interior.asp>, both accessed 19 October 2017.

96 Kickbusch, I and others, “We Need a Sustainable Development Goal 18 on Global Health Security” (2015) (385) 9973 The Lancet 1069 CrossRefGoogle Scholar.

97 Fricker, M, Epistemic Injustice: Power and the Ethics of Knowing (Oxford University Press, 2007)CrossRefGoogle Scholar.

98 Pohlhaus, G, “Discerning the Primary Epistemic Harm in Cases of Testimonial Injustice” (2014) 28(2) Social Epistemology 99, 107 CrossRefGoogle Scholar.

99 Foucault, M, The Birth of the Clinic (Tavistock, 1976)Google Scholar.

100 Pohlhaus, supra, note 98.

101 Hookway, C, “Some Varieties of Epistemic Injustice: Reflections on Fricker” (2010) 7 Episteme 151, 152 CrossRefGoogle Scholar.

102 Moore, A, “Beyond Participation: Opening up political theory in STS” (2010) 40(5) Social Studies of Science 793 CrossRefGoogle Scholar. This is a review of Brown, MB, Science in Democracy: Expertise, Institutions and Representation (MIT Press, 2009)CrossRefGoogle Scholar.

103 Knorr Cetina, K, “Laboratory Studies: The Cultural Approach to the Study of Science” in S Jasanoff and others (eds), Handbook of Science and Technology Studies (London, 1995)Google Scholar; Latour, supra, note 73; Lynch, M and Woolgar, S (eds), Representation in Scientific Practice (MIT Press, 1990)Google Scholar; Pickering, A (ed), Science as Practice and Culture (University of Chicago Press, 1992)CrossRefGoogle Scholar.

104 Irwin, A and Michael, M, Science, Social Theory and Public Knowledge (Open University Press, 2003)Google Scholar; Kerr, A, Cunningham-Burley, S, and Amos, A, “The New Genetics and Health: Mobilizing Lay Expertise” (1998) 7(1) Public Understanding of Science 41 CrossRefGoogle ScholarPubMed; Wynne, BE, “Knowledges in Context” (1991) 16 Science, Technology and Human Values 111 CrossRefGoogle Scholar; Wynne, BE, “Misunderstood Misunderstandings: Social Identities and Public Uptake of Ccience” (1992) 1 Public Understanding of Science 281 CrossRefGoogle Scholar.

105 Wynne, B, “Risk as a Globalising “Democratic” Discourse? Framing Subjects and Citizens” in M Leach and others (eds), Science and Citizens: Globalisation and the Challenge of Engagement (Zed Books, 2005)Google Scholar.

106 Jasanoff, S, “Technologies of Humility: Citizen Participation in Governing Science” (2003) 41 Minerva 223 CrossRefGoogle Scholar; Jasanoff, S, Designs on Nature (Princeton University Press, 2005)CrossRefGoogle Scholar Ch 10 “Civic Epistemology”.

107 Fischer, F, Reframing Public Policy: Discursive Politics and Deliberative Practices (Oxford University Press, 2003)CrossRefGoogle Scholar.

108 Foucault, M, The Birth of Biopolitics: Lectures at the Collège de France, 1978–1979 (Palgrave Macmillan, 2008)Google Scholar. Cf Lemke, T, “‘The Birth of Biopolitics’: Michel Foucault’s lecture at the Collège de France on neo-liberal governmentality” (2001) 30(2) Economy and Society 190 CrossRefGoogle Scholar. See further Dean, M, The Signature of Power: Sovereignty, Governmentality and Biopolitics (Sage, 2013)CrossRefGoogle Scholar; Lakoff, A, “Two Regimes of Global Health” (2010) 1(1) Humanity 59 CrossRefGoogle Scholar.

109 Hookway, supra, note 101, 158. Also see Wylie, A, “Why Standpoint Matters” in S Harding (ed), The Feminist Standpoint Reader: Intellectual and Political Controversies (Routledge, 2004)Google Scholar.

110 That is, knowledge on the inequalities producing death and ill health as found in bodies, see Krieger, N, “Embodiment: A conceptual glossary for epidemiology” (2005) 59(5) Journal of Epidemiology and Community Health 350 CrossRefGoogle ScholarPubMed.

111 As is the way in which this undermines efforts to combat address communicable and non-communicable diseases (NCD) and all threats to health. NCD are by far the biggest causes of morbidity and mortality worldwide, eg over 80% of deaths in the WHO Europe region are attributable to (generally non-communicable) major and chronic diseases, see Busse, R and others, Tackling Chronic Disease in Europe (WHO, 2010) 10 Google Scholar. See further Francis, LP and others (eds), “Pandemic Planning and Distributive Justice in Health Care” in M Freeman (ed), Law and Bioethics (Oxford University Press, 2008)Google Scholar; Stevenson, M and Moran, M, “Health Security and the Distortion of the Global Health Agenda” in S Rushton and J Youde (eds), Routledge Handbook of Global Health Security (Routledge, 2014)Google Scholar.

112 Richards, P, Ebola: How a People’s Science Helped End an Epidemic (Zed Books, 2016)CrossRefGoogle Scholar.

113 WHO, supra, note 8, 20. Emphasis added.

114 See, for example, Crawford, A, “Networked Governance and the Post-Regulatory State? Steering, Rowing and Anchoring the Provision of Policing and Security” (2006) 10(4) Theoretical Criminology 449 CrossRefGoogle Scholar.

115 For discussion, see Nuffield Council on Bioethics, Conducting Research and Innovation in the Context of Global Health Emergencies: What are the Ethical Challenges? (NCB, 2016)Google Scholar.

116 Gostin, LO, Public Health Law, 2nd edn (University of California Press, 2008) 18 Google Scholar.

117 ACT UP (AIDS Coalition to Unleash Power) was particularly important among US activists who challenged the biomedical sciences and changed drug testing conventions and licensing to accelerate the development of anti-retrovirals. See Epstein, S, Impure Science (University of California Press, 1996)Google ScholarPubMed.

118 Epstein, H, The Invisible Cure: Africa, the West, and the Fight against AIDS (Farrar, Strauss and Giroux, 2007)Google Scholar; P Farmer, “Introducing ARVs in Resource-Poor Settings: Expected and Unexpected Challenges and Consequences”, available at <quod.lib.umich.edu/c/cohenaids/5571095.0177.033?rgn=main;view=fulltext>; Forbath, WE with others, “Cultural Transformation, Deep Institutional Reform, and ESR Practice:South Africa’s Treatment Action Campaign” in LE White and J Perelman (eds), Stones of Hope: How African Activists Reclaim Human Rights to Challenge Global Poverty (Stanford University Press, 2011)Google Scholar.

119 Irwin, A, Citizen Science: A Study of People, Expertise, and Sustainable Development (Routledge, 1995)Google Scholar; Prainsack, B, “Understanding Participation: The “Citizen Science” of Genetics” in P Prainsack and others (eds), Genetics as Social Practice (Ashgate, 2014)Google Scholar.

120 For discussion, in the context of criminal justice, see O’Malley, supra, note 42. More broadly, in the context of health and safety and social work respectively, see Fraiberg, JD and Trebilcock, MJ, “Risk Regulation: Technocratic and Democratic Tools for Regulatory Reform” (1997) 43 McGill Law Journal 835 Google Scholar; Kemshall, K, “Risk Rationalities in Contemporary Social Work Policy and Practice” (2010) 40(4) British Journal of Social Work 1247 CrossRefGoogle Scholar.

121 Das, V, “Public Goods, Ethics, and Everyday Life: Beyond the Boundaries of Bioethics” (1999) 128(4) Daedalus 99 Google Scholar.

122 For example, Catley, A and others, “Participatory Epidemiology: Approaches, Methods, Experiences” (2012) 191(2) The Veterinary Journal 151 CrossRefGoogle ScholarPubMed; Allepuz, A and others, “Review of Participatory Epidemiology Practices in Animal Health (1980–2015) and Future Practice Directions” (2017) 12(1) PLoS ONE e0169198 CrossRefGoogle ScholarPubMed.

123 WHO, supra, note 8, 20. Emphasis added.

124 Haas, PM, “Introduction: Epistemic Communities and International Policy Coordination” (1992) 46 International Organisation 1 CrossRefGoogle Scholar.

125 Hewlett, BS and Hewlett, BL, Ebola, Culture and Politics: The Anthropology of an Emerging Disease (Wadsworth Books, 2008)Google Scholar.

126 Pfeiffer, DU and others, “A One Health Perspective on HPAI H5N1 in the Greater Mekong Sub-Region” (2013) 36(3) Comparative Immunology, Microbiology and Infectious Diseases 309 CrossRefGoogle ScholarPubMed.

127 Forster, P, “To Pandemic or Not? Reconfiguring Global Responses to Influenza” (2012) STEPS Working Paper 51 Google Scholar.

128 Medina, J, “Hermeneutical Injustice and Polyphonic Contextualism: Social Silences and Shared Hermeneutical Responsibilities” (2012) 26(2) Social Epistemology 201, 217 CrossRefGoogle Scholar. Emphasis added.

129 ibid 218. This responsibility is grounded in virtue theory. For discussion see Fricker, supra, note 97, and Medina, supra, note 128.

130 Medina, supra, note 128, 215.

131 Notably, participation rights have received growing attention. Most relevant to this article is the discussion within EU legal studies and global administrative law, see especially Mendes, J, Participation in EU Rule-making: A Rights-based Approach (Oxford University Press, 2011)CrossRefGoogle Scholar; Harlow, C, “Global Administrative Law: The Quest for Principles and Values” (2006) 17(1) European Journal of International Law 187 CrossRefGoogle Scholar.

132 In addition to O’Malley, supra, note 42, and the references in supra, note 120, see Waldron, J, Law and Disagreement (Oxford University Press, 1999)CrossRefGoogle Scholar.

133 UN Economic Commission for Europe, Aarhus Convention on Access to Information, Public Participation in Decision-Making and Access to Justice in Environmental Matters (adopted 25 June 1998, entered into force 30 October 2001) 2161 UNTS 447. Mentioned again in Chapter 6.

134 See, generally Fisher, E, Lange, B and Scotford, E, Environmental Law: Text, Cases, and Materials (Oxford University Press, 2013)CrossRefGoogle Scholar, especially Chapters 4, 5 and 13; Lee, M, EU Environmental Law, Governance and Decision-Making, 2nd edn (Hart, 2013)Google Scholar, Chapters 7 and 8. See further Yearley, S, “Bridging the Science-Policy Divide in Urban Air-Quality Management: Evaluating Ways to Make Models More Robust Through Public Engagement” (2006) 24(5) Environment and Planning C 701 CrossRefGoogle Scholar.

135 For discussion, see Brownsword, R, Rights, Regulation and the Technological Revolution (Oxford University Press, 2008) 128 CrossRefGoogle Scholar.

136 In this vein see Fairclough, N, Language and Power, 2nd edn (Routledge, 2001)Google Scholar.

137 Power, M, Organised Uncertainty (Oxford University Press, 2007) 20 CrossRefGoogle Scholar. Emphasis added.

138 ibid 20–21. Emphasis added.

139 Cf Leach, M and Scoones, I, “The Social and Political Lives of Zoonotic Disease Models: Narratives, Science and Policy” (2013) 88 Social Science & Medicine 10 CrossRefGoogle ScholarPubMed.

140 More broadly, the use of risk assessment in respect of highly unpredictable situations, including convicted criminals within the community, provides a way of reassuring the public – and, therefore, public legitimation of institutions – rather than actually protecting society. See Kemshall, H, Understanding Risk in Criminal Justice (McGraw-Hill, 2003)Google Scholar.

141 Rothstein, H and others, “A Theory of Risk Colonisation: the Spiralling Regulatory Logics of Societal and Institutional Risk” (2009) 35(1) Economy and Society 91, 103 CrossRefGoogle Scholar. Emphasis added.

142 For discussion of risk as the basis for social activism, see Beck, supra, note 71.

143 Power, supra, note 137, 21. Emphasis added.

144 Medina, J, The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and Resistant Imaginations (Oxford University Press, 2012)Google Scholar.

145 Cf Dunlop, CA and Radaelli, CM, “Systematising Policy Learning: From Monolith to Dimensions” (2013) 61 Political Studies 599 CrossRefGoogle Scholar.

146 “Pandemic 2009 Evaluations and Lessons Learnt”, available at <ecdc.europa.eu/en/seasonal-influenza/2009-influenza-h1n1/pandemic-preparedness/evaluations>, accessed 7 August 2017.

147 These include adaptive management and its variants, which seeks to place environmental problems within the wider systems that produce them: Rist, L and others, “Adaptive Management: Where Are We Now?” (2012) 40(1) Environmental Conservation 5 CrossRefGoogle Scholar. On the variants of adaptive management, see Holling, CS (ed), Adaptive Environmental Assessment and Management (John Wiley and Sons, 1978)Google Scholar.

148 See “Better regulation”, available at <ec.europa.eu/priorities/democratic-change/better-regulation_en#documents>, accessed 19 October 2017.

149 And for examples within the context of EU level GPHS, see European Commission, Staff Working Document on Strengthening Chemical, Biological, Radiological and Nuclear Security in the European Union – An EU CRBN Action Plan. Impact Assessment, SEC(2009) 790; European Commission, Staff Working Document on Strengthening Chemical, Biological, Radiological and Nuclear Security in the European Union – An EU CRBN Action Plan. Summary of Impact Assessment, SEC(2009) 791.

150 For discussion, see Flear, supra, note 17, Ch 2 “EU Public Health Governance”, 56–63.

151 Cf Leach, M and others, “Governing Epidemics in an Age of Complexity: Narratives, Politics and Pathways to Sustainability” (2010) 20 Global Environmental Change 369 CrossRefGoogle Scholar.

152 See supra, notes 36 and 37.

153 Magnusson, R, Advancing the Right to Health: The Vital Role of Law (WHO, 2017)Google Scholar.

154 For instance, according to the Explanatory Notes for the CFR, supra, note 40, Art 35 might be interpreted in light of Arts 11 and 13 European Social Charter (Revised) (3 May 1996, entered into force 1 July 1999) ETS 163. For discussion, see Hervey, TK and McHale, JV, “Article 35” in S Peers and others (eds), The EU Charter of Fundamental Rights (Hart, 2015)Google Scholar; de Schutter, O, The European Social Charter in the Context of Implementation of the EU Charter of Fundamental Rights (Document Requested by the European Parliament Committee on Constitutional Affairs) (EU, 2016)Google Scholar.

155 Murphy, T, “Repetition, Revolution, and Resonance” in T Murphy (ed), New Technologies and Human Rights (Oxford University Press, 2009) 7 CrossRefGoogle Scholar.

156 Brown, W, States of Injury (Princeton University Press, 1995)CrossRefGoogle Scholar; Brown, W, “Suffering Rights as Paradoxes” (2000) 7 Constellations 230 CrossRefGoogle Scholar. In relation to health, see Amon, JJ, “The ‘Right to Know’ or ‘Know Your Rights’? Human Rights and a People-Centred Approach to Health Policy” in J Biehl and A Petryna (eds), When People Come First: Critical Studies in Global Health (Princeton University Press, 2013)Google Scholar.

157 For example, Yamin, AE, “Suffering and Powerlessness: The Significance of Participation in Rights-based Approaches to Health” (2009) 11(1) Health and Human Rights: An International Journal 5 CrossRefGoogle ScholarPubMed.

158 Mann, JM, “Health and Human Rights: If Not Now, Then When?” (1997) 2(3) Health and Human Rights 113 CrossRefGoogle Scholar.

159 Murphy, T, Health and Human Rights (Hart, 2013)Google Scholar Ch 1 “Health and Human Rights”, 30.

160 Ashcroft, R, “Could Human Rights Supersede Bioethics?” (2010) 10(4) Human Rights Law Review 639 CrossRefGoogle Scholar.

161 In human rights participation is mentioned in several instruments, for example, Committee on Economic, Social and Cultural Rights, “General Comment No 12: The Right to Adequate Food (Article 11)” (12 May 1999) UN Doc E/C.12/1999/5; Art 28 Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (4 April 1997, entered into force 1 December 1999) ETS 164 (often referred to simply as the Oviedo Convention); Art 25 ICCPR. For further discussion, see Potts, H, “Participation and the Right to the Highest Attainable Standard of Health” (University of Essex Human Rights Centre, 2009)Google Scholar; Yamin, A, “Suffering and Powerlessness: The Significance of Participation in Rights-Based Approaches to Health” (2009) 11(1) Health and Human Rights: An International Journal 5 CrossRefGoogle ScholarPubMed.

162 Hunt, P and Backman, G, “Health Systems and the Right to the Highest Attainable Standard of Health” (2008) 10(1) Health and Human Rights: An International Journal 81 CrossRefGoogle Scholar; De Negri, A, “A Human Rights Approach to Quality of Life and Health: Applications to Public Health Programming” (2008) 10(1) Health and Human Rights: An International Journal 93 CrossRefGoogle Scholar.

163 For discussion, see Flear, supra, note 17, Ch 6 “Citizen Participation in Governing”.

164 Lazarus, L and Goold, BJ, “Security and Human Rights: The Search for a Language of Reconciliation” in BJ Goold and L Lazarus (eds), Security and Human Rights (Hart, 2007)Google Scholar; Loader, I and Walker, N, Civilising Security (Cambridge University Press, 2007)CrossRefGoogle Scholar; Von Tigerstrom, Ba, Human Security and International Law: Prospects and Problems (Hart, 2007)Google Scholar.

165 Ashcroft, supra, note 160, 640.

166 Murphy, supra, note 159, Ch 2 “Is Human Rights Prepared?”.

167 Chiming with Farmer, P, “Challenging Orthodoxies: The Road Ahead for Health and Human Rights” (2008) 10(1) Health and Human Rights: An International Journal 5 CrossRefGoogle ScholarPubMed.

168 Flear, M and Vakulenko, A, “A Human Rights Perspective on Citizen Participation in the EU’s Governance of New Technologies” (2010) 4 (10) Human Rights Law Review 661 CrossRefGoogle Scholar.

169 J Osborn, Harvard Law School and François-Xavier Bagnoud Center for Health and Human Rights Workshop, Economic and Social Rights and the Right to Health, September 1993, available at <www.law.harvard.edu/programs/HRP/Publications/economic1.html> and <hrp.law.harvard.edu/wp-content/uploads/2013/08/EconomicandSocialRightsandtheRighttoHealth.pdf>, 8.

170 Fischer, F and Gottweis, H (eds), The Argumentative Turn Revisited: Public Policy as Communicative Practice (Duke University Press, 2012)Google Scholar; Majone, G, Evidence, Argument and Persuasion in the Policy Process (Yale University Press, 1992)Google Scholar.

171 See Murphy, supra, note 159, Ch 2 “Is Human Rights Prepared?”.

172 Black, J, “Regulation as Facilitation: Negotiating the Genetic Revolution” (1998) 61(5) Modern Law Review 621, 623 CrossRefGoogle ScholarPubMed. See further Habermas, J, The Theory of Communicative Action. Volume 1: Reason and the Rationalisation of Society (Polity, 1986)Google Scholar.

173 Douglas and Wildavsky, supra, note 43, 6.

174 For discussion see Brownsword, R, Rights, Regulation and the Technological Revolution (Oxford University Press, 2008) 118 CrossRefGoogle Scholar.

175 Exclusion – akin to externalisation – is one main approach to risk management, whereas the other is inclusion: Rose, N, “Government and Control” (2000) 40 British Journal of Criminology 321 CrossRefGoogle Scholar.

176 A central theme in Jackson, E, Law and the Regulation of Medicines (Hart, 2012)Google Scholar.

177 Brownsword, R and Yeung, K (eds), Regulating Technologies: Legal Futures, Regulatory Frames and Technological Fixes (Hart, 2008)Google Scholar; Elbe, S, Security and Global Health: Toward the Medicalisation of Insecurity (Polity Press, 2010)Google Scholar; Jasanoff, supra, note 1.