Principles and practice in biobank governance
Kaye J., Stranger M.
© Jane Kaye and Mark Stranger 2009. The collection and storage of human tissue for medical research is not a new phenomenon. Neither is medical research interest in genetic heritage new, although before the relatively recent advances in genetic science and technology this interest was expressed in terms of family history. A medical practitioner could expect questions about a patients’ family medical history to be taken as a sign of their thoroughness and care. Such inquiries are perhaps accepted as benign or benevolent because they are like a natural extension of common civil greetings; such as ‘How are you?’ and ‘How is your family?’ But with the rapid advances in the human genetic sciences and the emergence of biobanks (and their potential links to other databases) the medical practitioner's inquiry could end up sounding more sinister. No don’t talk. Just open your mouth wide while I take a swab. I’ll be able to find out all I need to know about your family history … and its future. A genetic test has none of the benign veil of civility that cloaked the intent of a trusted doctor's inquiry into our family's medical history, rather its shadow can loom large with the fear of discovering some dreadful and inevitable future, and the potential for discrimination. The human genome's ‘Book of Life’ can be seen as just the introductory volume in an infinite series, where every individual has the ‘Book of MY Life’ written in their genes and awaiting publication. While the fear of uncovering indications of future diseases or disorders and concerns over the implications of acquiring this knowledge may lurk in the minds of the public, there is still a market for personal genetic information, as the emergence of direct to consumer testing companies demonstrate.