The goal of this article is to explore how a social justice framework can help illuminate the role that consent should play in health and science policy. In the first section, we set the stage for our inquiry with the important case of Henrietta Lacks. Without her knowledge or consent, or that of her family, Mrs. Lacks’s cells gave rise to an enormous advance in biomedical science—the first immortal human cell line, or HeLa cells.

ABSTRACTSome people might argue that there are already too many different documents, guidelines, and regulations in bioethics. Some overlap with one another, some are advisory and lack legal force, others are legally binding in countries, and still others are directed at narrow topics within bioethics, such as HIV/AIDS and human genetics. As the latest document to enter the fray, the UNESCO Declaration has the widest scope of any previous document. It embraces not only research involving human beings, but addresses broader (...) concerns in medicine and healthcare. The UNESCO draft declaration has some minor weaknesses, but on the whole, the strengths outweigh the weaknesses. One weakness is that some items in the draft are stated in a way that is too restrictive, thereby appearing to rule out legitimate activities. A strength of the Declaration is that it is relatively brief, yet at the same time contains sufficient detail to make it something more than a rehearsal of mere pieties. As the most recent of the numerous bioethics and human rights documents, the UNESCO draft draws on many of the earlier documents and also includes some of the most recent thinking about ethical norms and obligations. Perhaps its greatest strength lies not in details of the principles or their implementation, but rather in its stature as an international declaration issued by a United Nations organization. (shrink)

We should react to deaf parents who choose to have a deaf child with compassion not condemnationThere has been a great deal of discussion during the past few years of the potential biotechnology offers to us to choose to have only perfect babies, and of the implications that might have, for instance for the disabled. What few people foresaw is that these same technologies could be deliberately used to ensure that children would be born with disabilities. That this is a (...) real possibility, and not merely the thought experiment of a philosopher, is brought home to us by the decision of an American lesbian couple to select a deaf sperm donor in order to maximise the chances that their children, Jehanne and Gauvin, would be deaf like them.1 Their choice has sparked controversy, not only among medical ethicists, but in the opinion pages of newspapers across the world. Ought parents be permitted to make such choices?If the parents of Jehanne and Gauvin have done anything wrong, it must consist in violating their child’s right to an open future—limiting its future potential for choice.2 But what does it mean to respect this right?From the moment a child is born, her parents are making choices for her, which will powerfully shape her future. They will decide what kind of education she will have, what religious experiences, from among what group she can select friends. Thereby, they profoundly mould the person she will be and the life she will have.When this activity is carried out within certain, ill-defined, limits, it is in no way objectionable. It is not merely a …. (shrink)

The dual-use dilemma arises in the context of research in the biological and other sciences as a consequence of the fact that one and the same piece of scientific research sometimes has the potential to be used for bad as well as good purposes. It is an ethical dilemma since it is about promoting good in the context of the potential for also causing harm, e.g., the promotion of health in the context of providing the wherewithal for the killing of (...) innocents. It is an ethical dilemma for the researcher because of the potential actions of others, e.g., malevolent non-researchers who might steal dangerous biological agents, or make use of the original researcher’s work. And it is a dilemma for governments concerned with the security of their citizens, as well as their health. In this article we construct a taxonomy of types of “experiments of concern” in the biological sciences, and thereby map the terrain of ethical risk. We then provide a series of analyses of the ethical problems and considerations at issue in the dual-use dilemma, including the impermissibility of certain kinds of research and possible restrictions on dissemination of research results given the risks to health and security. Finally, we explore the main available institutional responses to some of the specific ethical problems posed by the dual-use dilemma in the biological sciences. (shrink)

Couples should not be allowed to select either for or against deafnessRecently, a US couple deliberately attempted to ensure the birth of a deaf child via artificial insemination.1 In opposing this action, I wish to focus on one argument they employ to support it, namely that in trying to have a deaf child, the women see themselves as no different from parents trying to have a girl. Girls can be discriminated against the same as deaf people and “black people have (...) harder lives”, one of them argues. They compare themselves to a minority group.2In using this argument to justify their attempt to secure the birth of a deaf child, they make four claims: It is not wrong to deliberately try to have a child who is expected to experience harm when the harms the child will experience are socially imposed. As a group experiencing socially imposed harms, the deaf are to be understood as a minority group. Women and people of colour also experience social harms, and are to be understood as minority groups. Because the deaf, women, and people of colour are all groups experiencing socially imposed harms, distinctions should not be made between attempts to have a child who will be a member of one of these groups.In reply, I will advance two arguments. First, I will argue that this couple’s decision is inherently just. Here I will acknowledge that this couple’s position draws a great deal of strength from its appeal to the experiences of women. My second argument will contend, however, that despite the reasonableness of this choice, the intentional selection of deaf children is indefensible. Granting this couple’s contestable assertion that the deaf ought to be understood as a minority cultural group, allowing individuals to secure the birth of deaf …. (shrink)