Contributors

Contributors

Contributors

Contributors

Many bioethical disputes are conceptual. This means that people quarrel about the use of words that they see as important. The underlying idea is that whoever wins the verbal argument will also be ethically right.

When I started doing clinical ethics rounds, in the mid 1980s, I decided to venture onto the pediatrics ward. The first patient I encountered was a 3-year-old girl returning to her room, groggy from general anesthesia. When I inquired about her, the nurse explained that she had just gone through the procedure to donate bone marrow for her 1-year-old sister, who was preparing to undergo bone marrow transplantation for leukemia.

The focus of the Special Section in this issue is the ethics of how knowledge is acquired through experiments on human subjects. Assuming that our use of language may have an effect on our thoughts and behavior, how we commonly understand the term “subject” in research with humans can undercut what is most important from an ethical perspective. The notion of “subject” can be crucially ambiguous in that it can refer to the units making up the “n” of a research study—those nameless, faceless, numbers supplying the information that supports, or fails to support, the researchers' hypothesis. On the other hand, “subject” can have a much deeper meaning. In addition to being participants in a study, the humans involved are, have been, or will be the subjects of lives—that is, they are real persons, with all the personal characteristics and social connections that entails. It is because of this status that they deserve to be regarded and protected. The degree to which we lose sight of this distinction increases the danger of crossing the ethical limits of human subjects research.

In addition to referring to the Cambridge Quarterly of Healthcare Ethics, the letters “CQ” have another meaning. Since 1912, “CQ” has been recognized as the international radio signal for alerting attention. This journal's goal has always been to alert you to the most important issues in bioethics, and none is more vital to the future of our field than how we define our professional community.

The recent history of the Canadian healthcare system has been increasingly one of shortages. There are delays for services that impose risk and hardship, disparities between the accessibility of healthcare for rural versus urban populations, and a lack of adequate coverage for or access to prescription drugs, diagnostic services, and homecare. Add to these problems shortages of healthcare providers—in particular, physicians and nurses—and state-of-the-art equipment, and we can understand the universal agreement that the Canadian healthcare system must change. The only question is how. Some argue for modifications within the basic framework of a one-tier single-payer system; others for more radical reform that will allow for infusions of money by expedients such as user fees, extra billing, or a full-blooded second tier where one can buy any healthcare one wants.I am indebted to Don Brown for comments and discussion.

With the considerable attention given to UNESCO's Universal Declaration on the Human Genome and Human Rights, the time has come to take another look at the concept of dignity, on which this document is morally founded. The term “dignity” now appears in many national constitutions and international bioethical statements. It has also become popular among Continental European ethicists, many of whom wish to challenge the particularly American and overtly individualistic principles of “autonomy,” “justice,” “beneficence,” and “nonmaleficence.”This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland. The first draft was presented at the fourth International Bioethics Retreat in Paris, May 2001. My thanks are due to the participants of the meeting for their constructive comments and suggestions.

Due to modern biochemistry and, in particular, recent developments in genomics, proteomics, and bioinformatics, human samples (organs, tissues, cells, genes, etc.) have become the most important raw materials for advancement in the health sciences. Such material has been at the center of fundamental biomedical research for a long time. What is new is its increased usefulness in research with direct clinical relevance, such as the development of drugs. Because of the larger commercial involvement in such research, this has also led to greater economic interests in human biological material and in the information that can be extracted from it.

Attempting to balance the needs and interests of minors with the obligation to protect them from their own potentially harmful decisions poses an ethical challenge for the physician. This problem is further exacerbated when the context is not medical treatment but organ donation. That is, medical treatment scenarios generally involve decisions likely to result in objective improvements to the minor's health status. Consent to organ donation, however, raises several vexing problems. First, how should the provider measure both the cognitive ability and competence to consent of the minor to ensure that the minor comprehends the risks and benefits of donation and that no coercion is involved? Second, given that improvement of one's health is an unlikely scenario, is there a way to measure subjective determinations of satisfaction and altruism enjoyed by a minor following organ donation? If so, should the physician regard these values in a manner analogous to physical improvement? Finally, are parents the appropriate decisionmakers for their children when a sibling-to-sibling donation occurs? Is it possible for parents to always act in the best interests of both children in this event?

What standard or principle should guide decisionmaking concerning the permissibility of allowing children to be organ donors? For a long time, it has been widely assumed that the best interest of the child is the appropriate standard. But recently, several critics have charged that this standard fails to give due weight to the interests of the family and the intimate relationships that the family makes possible.1,2 This article reviews and rejects both the best-interest standard (as it has been traditionally conceived) and the alternative standard recommended by the critics. I then propose a new standard to help parents, healthcare professionals, and judges decide when it is and is not permissible for children to serve as organ donors. This new standard modifies and broadens the best-interest standard to allow it to account adequately for the contribution that intimate relationships make to the well-being of children.

In discussions among nonphilosophers, the ethical argument from naturalness frequently comes up. “Of course, cloning should be banned—it is unnatural.” “Surely you cannot deny that homosexuality is unnatural (and hence it should be condemned).” “The immorality of gene technology is apparent because things like that do not happen in nature. Genes do not jump between species and crossbreeding produces infertile offspring.” Even those who come from a philosophical background can catch themselves thinking, “That is unnatural!” and finding grounds for suspicion from the thought. But what do we mean when we talk about (im)morality and (un)naturalness? What interpretations can be given to the ideas of natural and unnatural in ethical discussions? What are the implications of these interpretations? Are there good grounds for assuming that naturalness is morally better than its opposite?This paper was first presented at the Fourth International Bioethics Retreat in Paris, May 2001. I wish to thank the participants for their comments on my paper. This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland.

Bioethicists currently working in the United Kingdom demonstrate—as indeed do the very best of their colleagues internationally—an eagerness to engage in two extremely different but complementary approaches to their subject. First, they readily become involved in discussions of concrete bioethical issues that are of great concern to the medical profession, legislators, and the wider U.K. public. Second, perhaps because they recognize the importance of the “first-order” questions that exercise the public imagination, they show themselves commendably willing to turn their critical gaze onto the very methods and frameworks they use to address those questions. The first approach we can properly call “bioethical,” whereas we might term the second approach “metabioethical.”

Research involving the dead has not been regulated, and little, if any, institutional oversight has been provided. As a result, the numbers and types of research projects involving the dead are at best poorly characterized and at worst, unknown. The University of Pittsburgh instituted a mechanism for oversight of such research in June 2002. In this article, we report the experience of that oversight body, the Committee for Oversight of Research Involving the Dead (CORID), during its first 18 months.

In this paper I examine the ways in which the concept of “public interest” is used in biomedical policymaking to justify the preemption or overruling of decisions made by individuals about their own, their family's, or group interests in the field of healthcare. I discuss six variants of public-interest justification, before going on to consider a concrete example, the use of personal health data in health services management and medical research. I distinguish between the global public interest and particular public interests and consider critically how the global public interest can be said to arise from private interests. I show that there is always room for the private individual to defeat appeals to public interest on moral grounds, and hence that public interest cannot have overriding moral force. Hence, public-interest claims need to be considered as political appeals about competing claims and conceptions of justice, rather than as shortcuts to defining the universal solidary interest.

Informed consent is the bedrock principle on which most of modern research ethics rest. That principle, like most others, has some exceptions, such as for emergency situations and for some studies involving very low risk. But what about situations that do not fall into either of these categories? Are there such research studies that are so important to society that we nonetheless are willing to involuntarily enroll subjects, without their informed consent?

Last year we reported that there are no professorships in medical ethics in Finland. This year we are happy to report that a chair in medical ethics (albeit temporary) has now been advertised at the University of Turku. We also gave details about the attempts to come up with a law on assisted reproduction. As predicted, there were problems, and eventually the proposal was withdrawn, leaving Finland still without a law on assisted reproduction. The talk on large-scale genetic databases has been surprisingly quiet, and even the report published by the Parliament's working group on this matter, implying that a population database should be created, went virtually unnoticed. In this year's contribution, we address the issues of male circumcision, stem cell research, and, within the field of research ethics, the problem of defining medical research.

Despite the much-discussed court cases in the 1970s that permitted some sibling-to-sibling kidney donations from minors,1 principles that can guide parental, medical, or judicial decisionmaking are neither clearly articulated nor uncontroversial.