December 8, 2022

US workers could be forced to disclose genetic information to employers

No discounts on health insurance unless they surrender their right to genetic privacy

A 2008 US law, the Genetic Information Nondiscrimination Act (GINA) guaranteed Americans the right to withhold genetic records from their employers. But a bill working its way through Congress could force employees to disclose them or pay hefty fines.

Under the Preserving Employee Wellness Programs Act, companies would be entitled to collect this information as part of a workplace wellness program. These have become popular with employers to help employees live healthier (and cheaper) lifestyles. If an employee refused, he would be denied substantial discounts. Although theoretically employees would have a right to refuse, it could cost them thousands of dollars. Their right to privacy will be effectively repealed.

“If enacted, this bill would force Americans to choose between access to affordable healthcare and keeping their personal genetic and health information private,” said Derek Scholes, of the American Society of Human Genetics. “Employers would be able to coerce employees into providing their genetic and health information and that of their families, even their children.”

A spokeswoman for the House Committee on Education and the Workforce, which has just approved the bill, rejected these criticisms. She declared that “Those who are opposed to the bill are spreading false information in a desperate attempt to deny employees the choice to participate in a voluntary program that can reduce health insurance costs and encourage healthy lifestyle choices.”

The bill passed through the committee on party grounds, with Republicans supporting it and Democrats opposing it. Ironically, it is the Obama Administration’s Affordable Care Act which laid the foundation for positively discriminating in favour of workers who make healthy choices. The government allowed employers to charge 30% or even 50% more for health insurance if workers refused to participate “voluntarily” in wellness programs. 

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