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Patients’ Genetic Privacy Threatened by H.R. 1313

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Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month.

Under existing law, an employer can run a “voluntary” workplace wellness program – and can charge its employees more for health insurance if the employees decline to participate in that program. These workplace wellness programs, however, remain subject to protections contained in the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA).

H.R. 1313 would exempt employer “workplace wellness” programs from both the ADA and GINA. The bill would allow employers to require their workers to undergo genetic testing and health screenings, and to inquire about testing that family members have undergone. Employees who refuse to undergo such testing or to share the results could have to pay substantially higher premiums for their health insurance.

H.R. 1313 poses alarming threats to patient privacy and a disturbing potential for workplace and insurance discrimination. We encourage community members who want to weigh in on H.R. 1313 to comment via the system set up by the National Organization for Rare Disorders (NORD).

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Assisting and Advocating for the Bleeding Disorders Community