Genetic Privacy: A Challenge to Medico-Legal Norms

By Graeme Laurie | Go to book overview

PREFACE

This book was written in three institutions, each of which has an international reputation in the field of medical law. These are the universities of Glasgow, Edinburgh and Boston. I am extremely privileged to have worked in all of these with colleagues whose scholarship and enthusiasm for their subject has inspired me greatlyin myown work. The focus of much of that work from myundergraduate days and throughout myprofessional career has been the troublesome concept of privacy. I confess to a degree of obsession about myown personal privacy, and a scholarlyinterest in the subject has always felt like a natural corollary to the rest of mylife. But the breadth and depth of privacyanalysis is overwhelming, and little headwaycan be made unless one's attention is focused on a relativelynarrow area of debate. It is primarilyfor this reason that I have written this book about genetic privacy.

Advances in genetics pose some of the most intractable problems that medical lawyers and bioethicists have faced since the emergence of their disciplines onlya few decades ago. These problems are often hailed as being unique and therefore deserving of special attention. I disagree that theyare unique. I do believe, however, that these problems are presented in a more acute form in the realm of genetics, and accordingly this exemplar provides an excellent vehicle to examine broader matters that impact on these disciplines as a whole. What, for example, is the role of privacyin protecting individual and familial interests surrounding genetic information and its uses? How does a privacyanalysis fare against a confidentiality model? These concepts are often erroneously treated as being synonymous, leaving much doubt about their respective roles in the health care setting. Elsewhere, the principle of respect for individual autonomyhas emerged triumphant from the ethical principles that inform medical law, such that the search for patient consent now seems to be the sole legitimating factor in all dealings with patients. I argue that this is a flawed approach for a number of reasons, not least because

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