Population Biobanks: The Ethical Gravity of Informed Consent

Abstract

The question of informed consent has been central to public and scholarly debates on research biobanking, as well as to regulatory efforts. We discuss why this concept has gained such a central position and argue that it has less to do with its adequacy as a regulatory tool than with its capacity as a deflecting concept, shifting the focus away from more serious, but at the same time less governable issues. While its main value for medical science lies in its function as a signifier of ‘normal’ and responsible scientific conduct, in politics it functions as an ‘emergency exit’, a way to remove fundamental problems from the public and political field without having to solve the unsolvable. The individualizing gaze of informed consent overshadows questions of a predominantly collective nature, such as possible broader socio-cultural changes brought about by biobank-based research. However, the notion of genetic solidarity or altruism, which has been offered as an alternative framework to informed consent, does not open up the space for political and public debate on the objectives and consequences of research biobanks, but rather puts a further lid on such debate, through defining medical research as an unconditional good in its own right.