Duties and Rights of Biobank Participants: Principled Autonomy, Consent, Voluntariness and Privacy

Abstract

In this chapter the notion of principled autonomy is presented, and the perspective enabled by this notion is applied on the field of biobanking. Some consequences of the perspective of principled autonomy on aspects of biobank recruitment are discussed in relation to concepts of voluntariness, consent, and privacy. These discussions aim to focus on the fruitfulness of the notion of principled autonomy in bringing out the interconnectedness of the duties and rights of biobank participantsboth in general, and in a context of taking part in a research based universal health care system in particular.

Respect for Autonomy: Its Demands and Limits in Biobanking

“…281-282, Ursin [14], p. 72 and Caulfield et al [3], p. 70. This paper will consider what respect for autonomy demands-what duties are imposed on biobanks, researchers and related persons by the need to respect donor autonomy.…”