Biobanks, scientific culture, and research ethics

Abstract

Biobanks challenge the traditional model in research ethics, in which the autonomy of subjects donating samples for biomedical research is to be protected by means of informed consent. This paper identifies a global trend towards governance models more favourable to research, in which a single act of consent is used to authorize a wide range of research projects. It argues that the protection of autonomy is often understood just as the requirement to sign an informed consent form; but the autonomy of research subjects is neither an isolated decision nor a purely individual one, as it affects groups of people along time. Some ways out of this problem are discussed, both by re-conceptualizing autonomy and by expanding the informed consent process. Taking into account the relationship between public trust and donor participation, the possibility of respecting autonomy by means of narrative is suggested, with the aim of promoting the scientific culture of a population and debating the ethical issues raised by biobanks.