The genetic testing bill, currently overshadowed by the push to dismantle the Affordable Care Act, would allow for companies to ask workers invasive questions about their health. Opponents say it could also allow for employers to impose financial penalties on employees who do not comply.
While the the most prominent proposals in the new GOP health care plan—like the rollback of Medicaid expansion, which is now reportedly being expedited—are already horrifying, House Republicans are currently pushing a relatively unnoticed but equally terrifying bill through Congress. HR 1313, also known as the Preserving Employee Wellness Programs Act, and sponsored by Representative Virginia Foxx, would give companies and employers the right to access their employee's genetic and health information. Were that worker to not have record of their genetic makeup, the employer would be permitted to require their employee to undergo genetic testing.
As reported in STAT, this extreme violation of privacy is currently deemed unlawful under current legislation, including the 1990 Americans with Disabilities Act and a 2008 genetic privacy and nondiscrimination law known as GINA. While there are a few exceptions, under GINA it is unlawful for employers to use genetic information "to make decisions about hiring, firing, promotion, pay, privileges or terms." It is also illegal for employers "to request, require, or purchase the genetic information of a potential or current employee, or his or her family members."
But under the new program, which was introduced on March 2 and approved by the Committee on Education and the Workforce on March 8 with a vote of 22-17 (split along party lines), the current protections would be rescinded.
"Notwithstanding any other provision of law, the collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information with respect to another family member as part of a workplace wellness program," the bill reads under the section "Nondiscriminatory Workplace Wellness Programs."
On March 7, the day before the first committee approved the bill, the American Society of Human Genetics president Nancy J. Cox wrote a letter to the representatives, urging them to oppose it.
"[This bill] would allow employers to ask employees invasive questions about their and their families' health, as well as genetic tests they and their families have undergone," Cox said. "It would further allow employers to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees into providing their health and genetic information."
The ASHG's statement also outlines the potential fines that one could receive were they to not comply, which—in keeping with the GOP's prioritization of those who are wealthy and healthy—are not insignificant.
"The bill would also allow employers to impose financial penalties of up to 30 percent of the total cost the employee's health insurance on employees who choose to keep such information private," it reads. "According to the Kaiser Family Foundation, the average annual premium for employer-sponsored family health coverage in 2016 was $18,142. Thus, for such a plan, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information."
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