GINA Supporters Concerned House Bill Undermines Genetic Non-Discrimination Law

NEW YORK (GenomeWeb) – Supporters of the Genetic Information Non-Discrimination Act are concerned over H.R. 1313, legislation introduced recently by Representative Virginia Foxx (R-NC), which they say would dismantle the hard-won protections that individuals currently have restricting employers' ability to access their genetic data.

The so-called "Preserving Employee Wellness Programs Act," states essentially that as long as an employer sponsored wellness program meets the requirements under the Public Health Services Act and certain reward limits, it will also be in line with GINA. The bill includes language allowing workplace wellness programs to collect information from the employee about a manifested disease or disorder of a family member without violating GINA. The bill (see PDF below) also allows programs to offer employees rewards for providing such information in the context of health assessments, which detractors of the legislation say are essentially coercive penalities for employees who don't want to divulge such information.

"Congress has a strong tradition of protecting and preserving employee workplace wellness programs, including programs that utilize a health risk assessment, biometric screening, or other resources to inform and empower employees in making healthier lifestyle choices," the bill states.

According to the text of H.R. 1313, its provisions are in line with the Affordable Care Act, which permits implementation of wellness programs that offer inducements to encourage healthier lifestyle choices. The citation to the ACA in H.R. 1313 comes at a time when conservative legislators are in the process of trying to repeal and replace the law.

Though some employers and industry professionals say that collecting health-related information on individuals allows them to implement more effective prevention and wellness programs, there are many groups that believe this goes against GINA.

The 2008 law, which was more than a decade in the making, bars employers from using people's genetic data to make hiring, promotion, or other employment decisions. To ensure against these types of discrimination, GINA prohibits employers from requesting, requiring, or purchasing their employees' genetic information, except under limited circumstances. For example, employers can request genetic information when they offer health or genetic testing services, for example, as part of a wellness program. However, the law forbids employers from providing inducements on the condition that an employee provides genetic information.

Last year, the US Equal Employment Opportunity Commission finalized a rule stating that though under GINA employers cannot offer inducements to employees for providing genetic information within wellness programs, they can offer incentives to their spouses. There had been a longstanding confusion about whether the definitions of "genetic information" and "family member" within GINA meant that employer wellness programs couldn't incentivize the collection of health-related data from spouses. Much to the disappointment of groups such as the Genetic Alliance and the American Society of Human Genetics, the EEOC clarified that they could.

Genetic Alliance, ASHG, and some 50 groups have now signed a letter against H.R. 1313, expressing their strong opposition to any bill that "would allow employers to inquire about employees' private genetic information or medical information unrelated to their ability to do their jobs and to impose draconian penalties on employees who choose to keep that information private."

These groups argue that the incentivized data collection provisions in the bill are essentially a penalty for those that choose not to share that information and would essentially coerce employees into revealing their genetic data.

"Other than with respect to the medical history of employees' spouses, the current regulation does not allow the imposition of any penalties for employees who choose not to disclose genetic information," according to the letter. "However, H.R.1313 would allow penalties up to a maximum averaging many thousands of dollars per year if employees decline to disclose information from genetic tests that they, their spouses, their children, or their other family members have had, or if they do not reveal their families' medical histories."

The bill has been referred to the House Ways and Means Committee.

File Attachments
hr1313.pdf (pdf, 247 KB)

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