Companies such as 23AndMe and Ancestry.com market themselves as a fun resource to discover more about your past through analysis of your genetic makeup.
But genetic testing can also do much more, revealing predispositions towards certain illnesses. And given concerns about healthcare options for people with preexisting conditions, the privacy of such test results has turned controversial.
A new bill in the House, HR 1313, would allow employers to force their workers to take a genetic test and share the results with them or pay a penalty of thousands of dollars, per Ars Technica.
The bill has already passed through committee, getting approved by the House committee on education and the workforce along a party-line vote, and will likely form part of Republicans’ effort to repeal and replace the Affordable Care Act, also known as Obamacare, according to STAT.
In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which prohibited discrimination by employers and insurers based on genetic information, or even allowing employers to request that information, with exceptions. However, the Affordable Care Act allowed employers to demand that workers take part in workplace wellness programs or pay up to 50 percent extra for health insurance. Among those wellness programs, companies could ask employees about their personal habits or require them to undergo screenings for health issues or classes on health habits.
Under the Obama administration, the Equal Employment Opportunity Commission (EEOC) reaffirmed that such programs were voluntary despite the extra costs assigned to people who opted out. HR 1313 would place genetic testing under such wellness programs.
The bill’s proponents say it is necessary to reconcile the GINA’s nondiscrimination statutes with the Affordable Care Act’s wellness program mandates, while its critics argue that there is little evidence that workplace wellness programs produce beneficial results.
“What this bill would do is completely take away the protections of existing laws,” Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, told STAT.
“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,” a spokeswoman for the House Committee said in a statement. “We believe working families should be empowered with that choice, and so did the Obama administration. It is another sad reminder of just how extreme the Democrat party and their liberal allies are becoming.”
Meanwhile, people’s genetic data can also be sold as long as it is “anonymized,” meaning any obvious identifying characteristics are removed, per Forbes. But as Global News reports, DNA data carries so much information about a person that scientist think they will one day be able to digitally recreate mugshots based off DNA samples, meaning it is impossible to ensure genetic data is completely anonymous.
Such data may be attractive to advertisers, who could theoretically tailor ads to individuals, as well as hackers. And while federal law prohibits insurers from discriminating based on preexisting conditions, privacy advocates still fear that HR 1313 would provide employers with too much personal information about employees.
While the bill as is has been given a low probability of passing on its own by PredictGov, STAT reports that it is likely to be folded into another bill related to the American Health Care Act.
Correction: An earlier version of this story stated that the Genetic Information Nondiscrimination Act prohibits employers from requesting genetic data from employees. While GINA does stipulate this, it includes several exceptions, including wellness programs.