H.R. 1313 and the future of genetic privacy

In the 1997 film Gattaca, the protagonist is unable to pursue his dream job because of his “sub-optimal” genetic makeup. In 2008, the U.S. Congress passed the Genetic Information Nondiscrimination Act (GINA) to protect employees against discrimination on the basis of genetic information and violations of their genetic privacy on the job.

Now Congress is revisiting some of these important protections. The bill in question is H.R. 1313, the so-called “Preserving Employee Wellness Programs Act.” It seeks to weaken the privacy protections provided by GINA and the Americans with Disabilities Act (ADA) as they relate to employee wellness programs.

Under the proposed bill, instead of adhering to the exceptions for wellness programs under those statutes, health insurers and employers could simply comply with the Affordable Care Act (ACA) to gain access to employee health data for use in wellness programs.

By way of background, employee wellness programs are systems set up by employers – usually administered by third parties – that provide incentives to improve or maintain health. This can include incentives, such as gift cards or cash rewards, or penalties, such as higher premiums or even losing your job.

I’ll tip my bias on wellness programs – I generally don’t like them. When administered poorly, wellness programs can be healthist, sexist, and run afoul of the law. Additionally, there are little data showing their efficacy at either improving employee health or reducing insurance costs.

What will H.R. 1313 mean for health privacy on the job? I am a health and disability law scholar and have written extensively on both topics. Recently, my scholarship has shifted to genetic privacy and ownership as part of my work as a Greenwall Foundation Faculty Scholar. As an expert in this field, I am concerned about H.R. 1313.

While the ADA and GINA both require that wellness programs be voluntary, the ACA has no comparable provision.  Additionally, both laws provide that employers can only receive de-identified, aggregated employee health data from wellness programs. Again, the ACA is silent. I discuss the interplay between the proposed bill, the ADA, and GINA at more length elsewhere.

Could employers require employees to participate in ACA-compliant wellness programs then gain access to the resulting health data? Requiring employees to enroll in programs that include genetic testing could raise a number of issues, not limited to the lack of medically actionable information generated by genetic testing and the individual right not to know about predisposition to illness.

When I wrote Protecting Privacy to Prevent Discrimination, I noted that discrimination requires knowledge. In other words, an employer cannot discriminate against an employee based on a condition of which the employer is not aware. H.R. 1313 may open the door to information that could form the basis of discrimination. We should be wary of potentially arming employers with the information they need to discriminate against their employees.

In my “Genetics and the Law” class, we discuss GINA extensively. I tell my students GINA is unique because it was preemptive. In other words, it was not implemented to remedy existing discrimination based on genetic information, but to prevent it from happening in the first place. H.R. 1313 may loosen some of these important protections.

-By Jessica L. Roberts, J.D., health policy scholar in the Center for Medical Ethics and Health Policy at Baylor College of Medicine, George Butler research professor of law at the University of Houston Law Center and director of the Health Law and Policy Institute 

3 thoughts on “H.R. 1313 and the future of genetic privacy

  • At my last job, I started to enroll in a wellness program, but stopped because I found the questions too invasive. Ironically, I have shared my whole genome sequence publicly.

    Your well-written post concisely describes how HR-1313 will erode hard won protections found in ADA and GINA.

    It’s your genome. Who you choose to share it with is your business, not the business of your employer.

  • Pingback: Changing genetic privacy rules may adversely affect research participation

  • Very informative regarding the ACA-compliant wellness program..Great article


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