Sean Cordell

The ethics of biobanking: key issues and controversies

The ethics of biobanking is one of the most controversial issues in current bioethics and public health debates. For some, biobanks offer the possibility of unprecedented advances which will revolutionise research and improve the health of future generations. For others they are worrying repositories of personal information and tissue which will be used without sufficient respect for those from whom they came. Wherever one stands on this spectrum, from an ethics perspective biobanks are revolutionary. Traditional ethical safeguards of informed consent and confidentiality, for example, simply don’t work for the governance of biobanks and as a result new ethical structures are required. Thus it is not too great a claim to say that biobanks require a rethinking of our ethical assumptions and frameworks which we have applied generally to other issues in ethics. This paper maps the key challenges and controversies of biobanking ethics; it considers; informed consent (its problems in biobanking and possibilities of participants’ withdrawal), broad consent, the problems of confidentiality, ownership, property and comercialisation issues, feedback to participants and the ethics of re-contact.

The Biobank as an Ethical Subject

This paper argues that a certain way of thinking about the function of the biobank—about what it does and is constructed for as a social institution aimed at ‘some good’—can and should play a substantial role in an effective biobanking ethic. It first exemplifies an ‘institution shaped gap’ in the current field of biobanking ethics. Next the biobank is conceptualized as a social institution that is apt for a certain kind of purposive functional definition such that we know it by what it does and what it is designed to do. This purpose is then characterized further as essentially incorporating the human goods the institution is designed to serve, such that it plays a useful and indispensible role in how it should operate, i.e. in the ethics and governance of biobanking. Finally the ethical scope and limitations of such a theory is clarified by a discussion of some theoretical objections and suggested practical examples of its application.

Lost property? Legal compensation for destroyed sperm: a reflection and comparison drawing on UK and French perspectives

In a recent case in the UK, six men stored their sperm before undergoing chemotherapy treatment for cancer in case they proved to be infertile after the treatment. The sperm was not properly stored and as a result was inadvertently destroyed. The men sued the NHS Trust that stored the sperm and were in the end successful. This paper questions the basis on which the judgement was made and the rationale behind it, namely that the men ‘had ownership’ of the sperm, and that compensation was thus due on the grounds that the mens property had been destroyed. We first argue that the claim is erroneous and enhances the tendency towards the commodification of body parts. We then suggest that the men could have been compensated for the harm done to them without granting property rights, and that this would, at least in philosophical and ethical terms, have been more appropriate. To help illustrate this, we draw on a parallel case in French law in which a couple whose embryos had been destroyed were overtly denied ownership rights in them. Finally, we suggest some possible ethical and practical problems if the proprietary view expressed in the UK ruling were to become dominant in law, with particular focus on the storing of genetic information in biobanks. We conclude that, although compensation claims should not necessarily be ruled out, a ‘no property in the body’ approach should be the default position in cases of detached bodily materials, the alternative being significantly ethically problematic.

Doing What’s Best, but Best for Whom? Ethics and the Mental Health Social Worker

About the book: This is the first text of its kind to deal exclusively with applied social work ethics. It focuses on an eclectic mix of difficult moral questions or issues encountered in much modern day practice. It is therefore not theoretically driven with some practical elements attached, but is instead is a practice-based book, where any theory introduced is linked to tangible practice situations. It is also thought-provoking, controversial in parts and always engaging.