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. 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 analyzes why various guidelines differ. The book will be helpful to academics, biobankers, policy-makers and researchers in the field of medical ethics.
Foreword; Introduction; Selected existing genetic satabases: distinctive features, ethical problems and the public debate; The ethical debate: pronciples, 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.