Episode 220- Your DNA, Their Data: Privacy at the Crossroads of Consumer Genetic Testing, WEDI Genomics and Privacy & Security Workgroup Chairs

Michael welcomes 

• Dr. Sandy Rolfe, WEDI’s Genomics Workgroup Chair Clinical Content Lead, InterQual, Optum Insight
• Lesley Berkeyheiser, WEDI's Privacy & Security Workgroup Co-Chair, Assessor with DirectTrust
• Thanh Thien Nguyen, WEDI's Privacy & Security Workgroup Co-Chair, Executive Director, Kaiser Permanente

to discuss their workgroups working together to spotlight the intersection between direct to consumer (DTC) genetic tests and some different privacy and security issues associated with these types of tests. The two workgroups collaborated to develop a Fact Sheet to help consumers take action to protect their data, available here- https://www.wedi.org/2025/07/12/direct-to-consumer-genetic-dna-testing-actions-consumers-can-take-to-protect-their-health-data/ 

Current regulations and requirements Thanh Thien references in the episode

• HIPAA Privacy Rule- https://www.hhs.gov/hipaa/for-professionals/privacy/index.html
• HIPAA Security Rule- https://www.hhs.gov/hipaa/for-professionals/security/index.html
• Genetic Information Nondiscrimination Act of 2008- https://www.govinfo.gov/content/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf
• Federal Trade Commission Act- https://www.ftc.gov/legal-library/browse/statutes/federal-trade-commission-act
• California Consumer Privacy Act of 2018- https://oag.ca.gov/privacy/ccpa
• California Privacy Rights Act- https://thecpra.org/
• State Privacy Law Tracker- https://iapp.org/resources/article/us-state-privacy-legislation-tracker/