The Ethics of Human Genetic Databases: A Challenge to Classical Health Research Ethics?

"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 database and biobanks." "This book compares the new area of biobanking with the tradition of ethically accepted classical research. It highlights distinctive features of existing databases and guidelines, identifies areas of consensus and controversy, investigates why genetic databases are a challenge to classical health research ethics and analyses why various guidelines differ." "The book will be helpful to academics, biobankers, policy-makers and researchers in the field of medical ethics." "Elger splendidly describes the evolving global responses---both creative and misguided---to the ethical challenges arising in research using genetic databases and offers thoughtful suggestions for balancing the interests of science and ádonors'. As insightful as it is comprehensive, this book is essential reading not only for bioethicists but for anyone who uses, oversees, or simply wants to understand biobanks, which are playing an increasingly essential role in biomedical and epidemiological research. Alexander M. Capron, University of Southern California, USA" Bernice Elger provides a solid basis for better-informed discussion on the ethical issues of genetic databases: a well-structured analysis of diverse national legislation and regulation, a critical comparison of international guidelines, showing their imperfections and inconsistencies and a stimulating presentation of the ethical principles. The section on the need to embrace ásolidarity' as an ethical principle to counteract the overly individualistic approach of átraditional' ethical discourse in the field of medicine and life sciences is one of the high points of the book. It should be read by researchers using genetic databases, ethicists and decision makers. Timothy Harding, University of Geneva, Switzerland.