Ethics, law and governance of biobanking : national, European and international approaches

Abstract

Moral conduct—in research or otherwise—implies moral discretion and com- petence. We have argued in this paper that research ethics cannot be a matter of bioethicists drawing up documents and procedures which are then applied by the professionals. Ethics must, if it is to remain a practice of its own rather than developing into a branch of jurisprudence, be practiced through discourse. For this reason we need ethics review to be an arena for researchers to discuss their research, receive advice, and practice their ethics skills, and guidelines to be gen- erally applicable, value-based and inspirational rather than specific, rule-based and regulative. Whatever doubts we may have about the moral competence of researchers, in the long run it will be crucial to morally acceptable research. Though institution- alised distrust may still have its place in the regulation of biomedical research, much is to be gained by reworking ethics review and ethical guidelines to meet another end: supporting researchers in taking individual responsibility for their research.