Bernice Elger's Ethical Issues of Human Genetic Databases is required reading for anyone seeking a practical understanding of the intersection of biobanks and medical research ethics. Rather than a theoretical text, Elger offers a masterful survey of how actual medico-legal institutions have (mis)handled research genetic databases. At the heart of her book is a methodical analysis of the various laws, regulations, and guidelines that have been drafted, enacted, or adopted by many of the medical and commercial institutions that operate human genetic databases. As such, Ethical Issues of Human Genetic Databases is an adroit synthesis of the institutional and professional discourses implicated by research biobanks.
The traditional subjects of medical research-and hence medical research ethics-have been human beings. This has given rise to an ethical framework grounded on the principles of autonomy, beneficence, non-maleficence, and justice. As matters of professional -as opposed to theoretical-ethics, these principals stand on their own as the guiding lights of medical research decision making. In the case of genetic research databases, however, the subjects of research are no longer actual human beings, but instead dissociated tissue samples or information extracted therefrom. This distinction gives rise to the question that Elger's text ultimately addresses: are traditional medical ethics adequate to mediate these new research relationships?
Elger's answer to this organizing question comes in three parts. The first traces the histories of several high-profile human genetic databases, including the Icelandic Health Sector Database, the U.K. Biobank, and the Estonian Gene Bank Project. These narratives highlight the principal ethical issues raised by human research biobanks, namely: donor consent and privacy. The second part of Elger's text examines how the traditional axioms of medical research ethics have been applied to these thorny issues. Finally, the third act of Elger's book takes a closer look at the issues themselves, exposing their confounding complexity but also suggesting how traditional medical research ethics might rise to meet them.
As a work of descriptive rather than normative ethics, it is no criticism to observe that Elger's text lacks a coherent ethical theory. This admitted annoyance is merely a reflection of deontological predisposition of medical professional ethics-appropriately called Principlism. Such sophistic quibbles with Principlism aside, Ethical Issues of Human Genetic Databases stands out as a challenging but invaluable text to any student of bioethics.
Andrew D. Thibedeau, JD, is Senior Fellow with the Council for Responsible Genetics.