Biobanks and Blanket Consent: The Proper Place of the Public Good and Public Perception Rationales

Abstract

Population genetic databases (“biobanks”) raise tricky dilemmas over the issue of consent. This paper addresses the question of whether moving away from traditional, informed consent to a “blanket consent” regime for participation in large-scale biobanks is legally and ethically justifiable. First, it describes the biobanking context and the emerging dilemmas around consent. Then, it identifies and critically analyses two of the most common rationales for modifying consent norms in the biobanking context that feature within the international biomedical and policy-making debates and literature. They are: (1) the alleged need to balance the public good of biobanks and research against individual interests by moving away from costly and inconvenient traditional informed consent standards; and (2) the claim that public opinion research demonstrates public support for, or, at least, public acceptance of, blanket consent. The paper argues that neither rationale in fact offers sufficient justification for adopting a blanket consent policy. Too often, the rationales are put forward without proper reflection on, or appreciation of, the core legal and ethical principles that underlie existing norms, especially autonomy.