Bill Advances to Expand Access to Employee Genetic Information 13 Apr 2017


A bill advancing through the US House of Representatives – H.R. 1313 – would significantly expand employers’ rights in administering employee wellness programs. The bill would allow companies to require employees to undergo genetic testing, or be charged a higher amount for health insurance. It would also allow employers to see that genetic and other health information.

Employers currently have only limited power to request genetic testing of employees, under the provisions of the 2008 genetic privacy and nondiscrimination law commonly known as GINA. Under that law, employees cannot be compelled to turn over genetic information as part of a wellness plan if they choose not to share it. The new bill gets around that landmark law by stating explicitly that GINA and other protections do not apply when genetic tests are part of a workplace wellness program.

The bill, HR 1313, was approved by a House committee on Wednesday, along a strict party line vote. Both the American Benefits Council and the Society for Human Resource Management are backing the GINA exemption bill.

According to congressional testimony before the House Committee by the American Benefits Council, GINA’s current restrictions “put at risk the availability and effectiveness of workplace wellness programs,” depriving employees of benefits like “improved health and productivity.” The council represents Fortune 500 companies and other large employers that provide employee benefits. Testifying in favor of the measure on behalf of the American Benefits Council, Allison Klausner warned that without such legislation, “the future of workplace wellness programs are at risk.”

Last May, the EEOC issued final rules that restrict incentives that the ACA would otherwise allow, citing the need for compliance with the ADA and GINA. Under the EEOC’s guidance:

  • Wellness programs that ask questions about employees’ health or include medical examinations may offer incentives of up to 30 percent of the total cost of self-only coverage, but where the employer offers more than one self-only health plan and does not require the employee to be enrolled in a particular health plan in order to participate in the wellness program, the incentive may not exceed 30 percent of the lowest cost self-only plan the employer offers.

As a result of this interpretation, says Klausner, “Employers…[now] face complex and inconsistent regulation for the design and administration of wellness plans.

SHRM lobbyist Chatrane Birbal expressed similar concerns. She believes HR 1313 will “alleviate the confusing and conflicting requirements for wellness programs and provide employers the legal certainty they need to continue to offer employee wellness programs.”

Overall, the legislative environment in the US appears to be growing more permissive when it comes to leveraging big data to make health care delivery more efficient and drive down costs, even if that means making employees’ health data a bit less private.

It should also be noted that the protections of GINA do not apply to life insurance, long-term care, or disability insurance, meaning companies are free to ask for genetic information and reject anyone deemed too risky.

On the other side of the debate, this trend has raised concern about employees’ privacy rights, with objections coming from the scientific community as well as worker rights advocates.

If an employer has a wellness program but does not sponsor health insurance, rather than increasing insurance premiums, the employer could dock the paychecks of workers who don’t participate.

The privacy concerns also arise from how workplace wellness programs work. Employers, especially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic test results with employee names.

They sometimes sell the health information they collect from employees. As a result, employees get unexpected pitches for everything from weight-loss programs to running shoes, if countless strangers gain access to their health and genetic information.

Although not attached to the bill that would repeal and replace the Affordable Care Act, the genetic testing bill is expected to be folded into a second ACA-related measure containing a grab-bag of provisions that do not have to comply with the strict terms of the fast-track budget reconciliation process, as the main bill does. The Preserving Employee Wellness Programs Act still has to pass through two more House committees before the full House votes.