Genetic Data Bill Lacks Privacy Protections, Advocate Warns

Deborah Peel, founder of Patient Privacy Rights, said the Genetic Information Nondiscrimination Act, approved last week by the Senate Health, Education, Labor and Pensions Committee, would not fully protect people from losing their jobs or health coverage because it allows insurers and employers to hold patients’ electronic health information, Healthcare IT News reports.

The bill would prohibit health insurers from adjusting premiums based on genetic testing, restricting enrollment or requiring genetic testing to qualify for insurance. It also would prevent employers from using genetic information to discriminate in hiring, compensation and other personnel processes, and require employers to confidentially maintain any genetic data they possess.

Peel said the bill “forbids employers or insurers from using our genetic information to discriminate against us, but there is literally no way to stop them from doing that when they hold and possess the sensitive information.” She added that the nondiscrimination legislation underscores the need for a comprehensive federal health privacy bill to give U.S. residents control over their electronic health records.

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