The Hard Problem of Informed Consent: Risks and Limits of Personal Autonomy in Biobanks

Abstract

This article explores the connection between biobanks and society through informed consent. An analysis of the risks associated with biobanks and the idea of informed consent in the context of the functioning of biobanks are carried out. The hypothesis of this study is that the concept of informed consent structurally, at the level of risk assessment in relation to oneself and close relatives, does not coincide with the beneficiary model of obtaining scientific knowledge based on justice and the concept of minimal harm. This may argue for the principle of informed consent based on respect for the principle of autonomy. The article makes the assumption that the introduction of an extended informed consent form without the possibility of specifying in which studies biospecimens will be used affects not only individual interests, but also the interests of immediate relatives. Finding such a model of informed consent, where not only the arguments of the beneficiary model and the concept of negligible risk, implemented on the basis of an individual decision, will be taken into account, but also family connections will be taken into account, can be considered the task of adapting informed consent to the work of biobanks.