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