Ethical Issues of Human Genetic Databases

'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 "donors". 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 "solidarity" as an ethical principle to counteract the overly individualistic approach of "traditional" 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 '... this book is very well researched and presents a thorough analysis of existing regulatory frameworks...' Asian Bioethics 'This book would be of high interest to clinical and scientific leaders of genetic biobank initiatives, to biobank custodians, and to members of ethical review committees overseeing operational aspects. It is essential reading for any student, or donor for that matter, interested in the ethical challenges and dilemmas that have in the past, and will continue in future, to influence research patterns and progress using these valuable resources.' New Zealand Medical Journal ’...stands out as a narrative worth reading...’ Bioethica Forum