In the last three years alone, 20% of U.S. states - large and small, conservative and liberal leaning - have enacted genetic privacy bills targeted at direct-to-consumer genetic test data. The legislation bolsters important informed consent protections, but it fails to adequately address public concerns regarding use of this genetic data by third parties, particularly law enforcement and life, long-term care, and disability insurers. Existing bioethics research has identified key elements of legal protection that will more robustly address public privacy concerns. This project seeks to build upon current state legislative momentum to strengthen the genetic privacy laws across the country. Working with data visualization experts, the team will develop a website that aims to educate policymakers, journalists, and others about the importance of key issues related to genetic privacy and about research-informed best practice via a map highlighting current trends in genetic legislation, as well as educational information and links to further resources.
Strengthening Genetic Privacy Law Through Bioethics
University of Iowa