Genetic Data and the Law A Critical Perspective on Privacy Protection

Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.

1. Introduction; 2. Privacy; 3. Genetic data; 4. The law; 5. Data in common; 6. Anonymity; 7. Human tissue; 8. Genetic discrimination; 9. Potential, promise and possibility.

Research using genetic data must be properly regulated. Regulation that does not take account of the public interest in research and privacy protection might undermine the legitimacy of the regulatory environment. Using genetic data as an example, Mark Taylor explores the limitations of the current law of data protection.

Mark Taylor is a lecturer at the University of Sheffield and Deputy Director of the Sheffield Institute for Biotechnological Law and Ethics. His primary research interest concerns the legal and ethical issues raised by scientific developments in genetic testing and screening technologies.