Genomics Governance in the United States and the United Kingdom

Abstract

Technological innovation in the area of personalised genetic data poses novel regulatory concerns for state governance. Since personalised genetic data reveals highly sensitive and private information about a person’s susceptibility to illness, it may lead to stigmatisation, discrimination, and breach of privacy. Although legal arrangements for personal or medical data have always been governmental and legal concerns, the introduction of genetic technologies over the past two decades has breathed new life into the idea of privacy and non-discrimination protection for individuals and communities, leading to possible new types of social relationships that circulate in a global biomedical arena. Thus, our analysis of genetic information regulation is based on a comparative analysis of policy instruments by examining the appropriateness of various policy instrument choices made in the United States and in the United Kingdom for securing the rights for privacy, non-discrimination, and access to research benefits for individuals and communities.