ABSTRACT

In the medical context human genetic banking has attracted a quite different discourse, with individual rights at the forefront: those relating to the informed consent of actual and potential donors to the database. Two research areas require human genetic banking in previously unknown dimensions: pharmacogenomics and population genetics. Pharmacogenomics relies on the hypothesis that responses to medication are significantly affected by a patient's genetic make-up. Population genetics relies on the hypothesis that common diseases can be linked to a complex interplay of genetic predispositions with life style and environmental factors. The chapter discusses why scientific research demands large human gene banks; the question of informed consent, and issues which that raises; and how to conceptualise the moral issues at stake, given the limitations of a framework oriented solely by informed consent. Human genetic banking is increasingly taking the form of large sample collections, where donors have given broad, though probably not unlimited, consent for future research.