NORD Asks Congress to Keep Medical and Genetic Privacy Protections Intact

From the National Organization for Rare Disorders (NORD) action alert:

Federal lawmakers are currently considering a bill that intends to clarify regulations of employee wellness programs, but instead threatens our medical and genetic privacy.

The Preserving Employee Wellness Programs Act (H.R. 1313) would exempt employee wellness programs from critical patient protections included in the Americans with Disabilities Act (ADA) and Genetic Information Nondiscrimination Act (GINA). This bill would roll back decades of critical patient privacy protections and allow employers to collect information on their employee’s genetic makeup and medical history.

The privacy of millions of individuals with rare diseases could be violated by making incredibly personal and private genetic information legally accessible to employers under the threat of increased premiums. For patients with genetically detectable rare diseases or predispositions to such diseases, privacy is crucially important for individual independence, dignity, and protecting against workplace discrimination.

This bill intends to clarify regulation of wellness programs, but instead could significantly undercut patient privacy protection for employees at high risk for workplace and societal discrimination given the nature and severity of their illnesses or risk of illness.

Please join us in telling Congress that this is unacceptable. Tell your U.S. Senators and Representative to oppose H.R.1313, and stand up for the privacy of patients.

Click here to take action!