Ethical considerations for biobanking: should individual research results be shared with relatives?

Abstract

The case against returning IRRs to donors While many accept the first conclusion, far fewer accept the second. Indeed, if anything, the trend has been explicitly to reject it. Increasingly, bioethical opinion and inter national policies are “converging towards an ethical duty to return individual genetic research results to subjects, provided there is proof of validity, significance and benefit” [3]. Citing a wide variety of ethical principles, this emerging consensus holds that there are at least some, if not many, situations in which it would be unethical not to disclose certain research findings. This claim has some intuitive appeal. Careful scrutiny, however, also reveals many weaknesses. Consider first, a ‘negative’ duty to return IRRs – that is, a duty to refrain from worsening the situation of others. Researchers have duties, for example, not to harm others and not to interfere with their ability to live according to their own values and preferences. However, such duties are fundamentally inapplicable in this context. While it may not make people better off, a policy of not returning IRRs can never, itself, make donors worse off. A donor’s prior health status, genetic profile and knowledge are left entirely unchanged – and, hence, neither improved nor worsened – by such a policy. Consider then, a second kind of moral obligation – a ‘positive’ duty – to return IRRs. Such duties require actively contributing to certain outcomes for others, such as by assisting or The issue of returning individual research results (IRRs) is important and contentious. Indeed, Science magazine calls this, “...the most pressing issue in genetics today” [1]. At stake are several significant concerns, including public trust in, and support for, biomedical research, the wise use of limited research resources and the ethical obligations of the research community. These concerns become even more complex and challenging with genetic biobank research. In this context, researchers must decide not only whether and how to share IRRs with donors, but also their relatives. After all, many genetic conditions have medical or personal significance for family members, and many ethical arguments for returning IRRs to donors might seem to extend to relatives as well [2]. This editorial briefly defends two important conclusions about these issues: