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Sign On to Preserve GINA and ADA Protections

March 20, 2015

Dear Members of Congress:

We wish to express our strong support for the Genetic Information Nondiscrimination Act (GINA) that was signed into law by President George W. Bush in 2008 and the Americans with Disabilities Act (ADA) signed into law by President George H.W. Bush in 1990. We are concerned, however, by recently introduced legislation that seeks to exempt employer-based wellness programs from GINA and the ADA. We strongly oppose any policy that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and penalize employees who choose to keep that information private.

GINA ensures that all Americans are free from genetic discrimination by health insurance providers and employers. Insurance providers cannot use genetic information for underwriting purposes nor request patients to undergo genetic testing. Employers cannot discriminate against employees with respect to compensation, terms, conditions, or privileges because of genetic information. Furthermore, GINA not only prohibits discrimination itself but it also greatly restricts access by employers and issuers of insurance to genetic information to minimize the potential for discrimination. In general, employers may not request, require or purchase their employees’ genetic information. They are also prohibited from asking employees about the medical conditions of their family members. However, importantly, an exception to this general prohibition allows an employer to offer health or genetic services as part of a wellness program where an employee’s participation is voluntary.

The ADA protects all Americans from workplace discrimination on the basis of disability. Employers are prohibited from subjecting employees to medical inquiries and examinations that are not job-related and consistent with business necessity, unless those inquiries are voluntary and asked as part of a wellness program.

These provisions of GINA and ADA are carefully crafted to ensure that employers can only obtain or request protected genetic and medical information when the employee voluntarily provides it. Under this rule, employees, for example, may enjoy the benefits of an innovative wellness program such as a clinic provided by their employer that includes voluntary health screening services, while remaining confident that they are protected from potential discrimination.

We oppose provisions within the Preserving Employee Wellness Programs Act (S. 620/H.R. 1189) that would repeal GINA and ADA requirements that wellness program requests for employees’ medical and genetic information be voluntary, opening the door to employers coercing employees into revealing their private health and genetic information. Wellness programs are fully able to encourage healthy behaviors within the current legal framework: they need not collect and retain private genetic and medical information to be effective. They do not need exemptions from important federal civil rights statutes like GINA and the ADA, and individuals ought not to be subject to steep financial pressures by their health plans or employers to disclose their or their families’ genetic and medical information.

GINA was passed by Congress with very strong bipartisan support. It was passed by the Senate unanimously and in the House of Representatives by a vote of 414-1, demonstrating overwhelming Congressional support for prohibiting genetic discrimination and ensuring genetic privacy for employees. Likewise, the ADA passed the Senate by a vote of 76-8 and was unanimously approved by the House of Representatives. We, the undersigned, strongly urge you to preserve the nondiscrimination protections afforded to all Americans by GINA and the ADA and oppose the Preserving Employee Wellness Programs Act.


(Note: at this time we are only accepting organizational signers. Please be sure you are authorized to sign for your organization.)

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