The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals - like our SADS families - from genetic discrimination in health insurance and employment. 

While proud that we helped pass GINA (with a lot of support from our families), the law's underpinnings are being threatened by voluntary employee wellness programs that in certain cases require workers to undergo medical testing and answer questions related to disabilities.

This requirement goes against the statutes provided and protected by the GINA legislation in protecting people with genetic conditions from such requirements as they relate to their employment.

Voluntary wellness programs encourage and incentivize healthy behaviors, leading to better health overall and reduced health care costs. However, we strongly oppose any program that would undermine the protections enacted through GINA by requiring medical examinations and disability-related questions, as they can negatively impact people with SADS conditions.

The US Equal Employment Opportunity Commission is currently moving forward with addressing how regulations can clarify how GINA and these types of programs can coexist legally and in a way that provides the most benefit to everyone involved.

However, House Bill 1189 would significantly limit the Commission's ability and authority to investigate and litigate discrimination complaints made against wellness programs. We urge you to contact your state Representatives (you can find them by clicking here) and encouraging them to speak out against this proposed legislation.

For more information about GINA and how it protects our families, click here.