24 - The impact of biobanks on ethical frameworks

Summary

Alongside the extensive discussion that has taken place about the ethical, legal and social aspects of genetic databases and biobanks, it is also appropriate to step back and reflect on that discussion itself, and examine the ways in which scientific developments can affect ethical debate. There has been a certain amount of discussion about the implications of biobanks for ethics – concerning, for example, whether the ethical principles applicable to medical research as conventionally understood are appropriate in the era of population-based genomic research. This has importance beyond the immediate context, as it raises theoretical issues about the nature of ethics, and more particularly bioethics, itself. It is our contention in this chapter, however, that different kinds of claims can be, and yet insufficiently have been, clearly distinguished in these debates. When thinking about the impact of biobanks on ethical frameworks, a number of different things might be at stake, so it is important to clarify what is meant by ‘impact’ in this connection. We suggest that there are at least four different possibilities:

1. the ways in which discussions have developed about ethics and governance in different countries which have biobank initiatives. Here, the ‘impact’ might simply be that as a matter of fact these initiatives have led to both academic and societal discussion about what governance arrangements can and should be put in place. This claim is most interesting from a social and legal, rather than an ethical, perspective.

2. the ways in which thinking about biobanks has led to the development of new models to deal with pressing practical problems. In this version the impact not only relates to the fact of discussion about governance arrangements but emphasizes newness or novelty in the models proposed – or at least modifications of existing models of governance.

3. […]