The Excerpt SPECIAL | Is your genetic data secure?
Apr 16, 2025
Kayte Spector Bagdady, a health law and bioethics expert from the University of Michigan, dives into the alarming implications of genetic data privacy, especially after the 23andMe bankruptcy. She highlights risks including potential discrimination and scams stemming from data exposure. The discussion covers legislative gaps in protecting consumers and the ethical concerns of law enforcement using genetic data. Kayte also addresses the challenges families face with genetic testing and the necessity of robust privacy protections in a rapidly advancing tech landscape.
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Risks of Genetic Data Misuse
- Genetic data collected by services like 23andMe can be used in harmful ways such as discrimination or scams.
- This risk is not unique to 23andMe; other DNA testing firms face similar data privacy threats.
Privacy Policy Transparency Issue
- 23andMe's privacy policies warn that data may be sold or shared during bankruptcy.
- Many users do not read or understand these terms, creating a transparency issue.
Limits of Genetic Anti-Discrimination Law
- The Genetic Information Non-Discrimination Act (GINA) protects against discrimination by employers and health insurers.
- It does not cover discrimination concerns related to life or long-term health insurance.