The Ethical Challenges of Genetic Databases: Safeguarding Altruism and Trust

Abstract

Population genetic databases are emerging rapidly, and raise a novel set of ethical and legal issues. This article considers four key ethical questions and their implications for governing population genetic databases: (1) the nature of consent; (2) participants' ongoing relationships with such projects, particularly in relation to feedback of results; (3) control over access to data and biosamples; and (4) participant and public influence over the use of such resources. It then argues that two broader ethical themes—altruism and trust—in fact underpin population genetic databases, and emerge from examining the ethical issues. Recognising this fact makes it easier to find appropriate solutions to the ethical issues. But altruism and trust themselves impose ethical obligations on population genetic database creators and custodians. Properly safeguarding altruism and trust, upon which population genetic database projects fundamentally depend, requires three additional measures: (1) ongoing participation and partnership; (2) independent ethical oversight; and (3) openness and accountability.