Senate bill won’t prevent genetic discrimination, privacy activist says

A genetic nondiscrimination bill approved Thursday by a Senate panel won’t protect people from potentially losing their jobs or health insurance if the information gets out electronically, a privacy activist said.

Deborah Peel, MD, founder of Patient Privacy Rights, said the Genetic Information Nondiscrimination Act (GINA), approved April 24 by the Senate Health, Education, Labor and Pensions Committee, will not protect people because it allows insurers and employers to hold genetic information, a right that should be solely in the hands of people.

“Essentially, the bill addresses what to do once the horses (our genetic and DNA test results) are out of the barn,” Peel said. “It 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 that sensitive information.”

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