Ethical Issues of Human Genetic Databases

Following the boom in population databases in recent years there has been sustained and intense international debate about political processes and legal and ethical issues surrounding the protection and use of genetic data. As a result, several national and international organizations and committees have published widely differing guidelines and statements concerning genetic databases and biobanks. Ethical Issues of Human Genetic Databases compares the new area of biobanking with the tradition of ethically accepted classical research and highlights the distinctive features of existing databases and guidelines. The volume identifies areas of consensus and controversy while investigating the challenges posed to classical health research ethics by the existence of genetic databases, analyzing the reasons for such varying guidelines. The book will be essential to academics, biobankers, policy-makers and researchers in the field of medical ethics.

Professor Bernice Elger teaches health law and bioethics at the Institute of Legal Medicine, University of Geneva. She is a member of an international collaboration project on ethical issues of human genetic databases, with involvement of the Department of Ethics, Trade, Human Rights and Health Law at the World Health Organization (WHO) headquarters in Geneva, a member of the subcommission who wrote the Swiss guidelines on biobanks, a member of the ethics board of @neurist, an international data and sample bank project financed by the European Commission, and a member of a Swiss working group on informed consent (Swiss Biobank).

Contents: Foreword, Arthur L. Caplan; Introduction; Selected existing genetic databases: distinctive features, ethical problems and the public debate; The ethical debate: principles, values and interests - the ethical foundations of guidelines; Selected issues of consensus and of controversy; Ethical issues human genetic databases and the future; References; Index.