Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the Preserving Employee Wellness Programs Act (H.R.1313):
“Last week, the House Committee on Education and the Workforce voted to advance the Preserving Employee Wellness Programs Act (H.R.1313). This bill exempts employee wellness programs from critical patient protections included in the Americans with Disabilities Act (ADA) and Genetic Information Nondiscrimination Act (GINA).
NORD represents all 30 million Americans with one of the 7,000 known rare diseases. Over 80 percent of these diseases are genetic, the majority of which are present at birth. None of these diseases are curable, and only a handful have a treatment.
We strongly oppose H.R.1313. This bill would roll back decades of critical patient protections and allow unscrupulous employers to punish individuals for their genetic makeup through insurance or workplace discrimination. 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 harsh financial punishment. Family members would also be at risk of forcibly discovering information on genetic predispositions they did not electively pursue.
The ADA and GINA forbid employers from requiring or requesting genetic testing. Instead, employers are currently allowed to offer genetic testing as part of employee wellness programs, and are only permitted to access the results if the employee elected to join. H.R.1313 would completely eliminate this protection.
NORD will do everything in our power to prevent this bill from moving forward in its current form. We will work with our over 260 member organizations and thousands of intrepid patient advocates to ensure this bill does not become law. In doing so, we will count on our Congressional champions throughout Congress, including leadership, to prevent our patients from being discriminated against.”