What’s protecting us from a future where we have to share our genetic information with our job? Not much, at least legally. A House committee has approved HR 1313, a bill that would let companies make employees get genetic testing and share that information with their employer — or pay thousands of dollars as a penalty.
Right now, this isn’t allowed because of the Genetic Information Non-Discrimination Act (GINA). The new bill — sponsored by Virginia Foxx, a Republican congresswoman from North Carolina — claims that GINA shouldn’t apply when genetic tests are part of “workplace wellness” programs.
It’s meant to make wellness programs stronger. Employees who participate usually go through some medical screenings, take a bunch of health questionnaires, and are sometimes offered incentives like cheap gym memberships. The idea is that participating will make employees healthier, which helps the employer save on health insurance costs. That said, studies have shown that these programs usually don’t work anyway.
The law we have protecting our genetic privacy isn’t very safe
Worse, they’re not exactly voluntary: under the Affordable Care Act, employers can charge employees 30 to 50 percent more for health insurance if they don’t participate. The new bill wouldn’t technically force someone to undergo genetic screening, but being charged extra for choosing privacy is coercive. Finally, the way that wellness programs are run makes genetic privacy even more tenuous. Big companies often hire third parties to run these programs, which would potentially give them access to see these employee results, further violating privacy.
This specific bill is in such early stages that it’s unlikely to pass, but it’s a reminder that we don’t have a lot of protections when it comes to genetic privacy. We can do so much more with genetic testing than in the past; they’re much cheaper and more common than before. As the tech advances, there will be more questions about how to deal with all the information we obtain. And right now, all we have are laws like GINA, which are very weak anyway. There are other loopholes and penalties for violating the law are scant.
There are two separate but entwined concerns: genetic privacy and genetic non-discrimination. Genetic privacy is the idea that says you shouldn’t have to share your genetic information with anyone else. For example, people shouldn’t be able to follow you around, pick up your DNA, and sequence it without getting permission. Genetic non-discrimination is the idea that, even if someone knows your genetic information, it shouldn’t affect a hiring decision or health insurance premium.
The new bill hits on both: it means workers will have to pay a penalty in premiums in order to maintain their genetic privacy. Technically, the information employers get under doesn’t have individual people’s names on it. But studies have shown that it’s easy enough to identify anonymous genetic data by just cross-referencing it with information online, no special tools needed. That hits on genetic non-discrimination too. Without legal protection, if you can be identified as having, say, a genetic variant that increases your likelihood of cancer, that’s something that an employer might choose to let you loose for, rather than being on the hook for your insurance premiums.
“If you imagine a world in which that information is always and automatically shared, you might be more hesitant to learn information about yourself,” says Natalie Ram, a professor of law focusing on bioethics issues at the University of Baltimore. That information may even be vital to maintaining your health.
Mandatory genetic screenings for sickle-cell anemia led to discrimination
For instance, there are debates on whether people should be screened for Huntington’s, an incurable genetic disorder that manifests in middle age. People with one parent with Huntington’s have a 50 percent chance of having the disease — and sometimes people simply don’t want to know if they’ll develop it later. “If employers could request individuals to disclose results of genetic screening or request that employees have certain screenings, it’s taking the decision out of the hands of individual patients and putting it more in the hands of those patients’ employers,” says Ram. “That’s a really serious shift.”
Genetic anti-discrimination laws date back to the 1970s. Around that time, several states passed laws requiring genetic screening for sickle cell anemia, a blood disease that disproportionately affects African-Americans. This led to panic because many people don’t understand how to interpret genetic results and thought they were ill. “We think of genetic testing as something that will give us pretty definite information regarding our risk for disease whereas in reality genetic testing is more probabilistic,” says Ifeoma Ajunwa, a fellow at Harvard’s Berkman Klein Center who has written about genetic privacy. “People don’t have an intimate understanding of how genetics works, and they think that just because you have the trait sometimes you have the disease. That’s not true.”
In this case, many people tested positive for sickle cell trait but didn’t have sickle cell anemia. Still, these people ended up being discriminated against in insurance and employment, and other things. That started a push for laws against genetic discrimination, with President Richard Nixon eventually signing a law requiring sickle cell screenings to be voluntary. Without such measures, populations that are more susceptible to genetic disorders — for example, people of Mediterranean descent or Ashkenazi Jews — could be disproportionately affected.
Most cases involving genetic discrimination have to do with health care and employment, but there are other scenarios where these issues come into play, says Mark Rothstein, a bioethicist at the University of Louisville. In California, it’s legal to ask for genetic information in residential real estate transactions. So if you apply for a 30-year mortgage, someone could demand your genetic information and then deny your mortgage policy if they think you won’t be alive that long.
That brings us to GINA, which Rothstein says is a very weak bill. It was originally proposed in 1995, when the main worry was that no one would want to be tested for genetic research purposes if there was no law against genetic discrimination. The insurance industry opposed GINA, arguing that if they didn’t know the genetic risk, they couldn’t calculate accurate premiums. “It was a 13-year back and forth until finally the bill weakened so much that nobody really cared to oppose it anymore,” says Rothstein. For example, provisions that would have subjected employers to damages and punitive damages for violations were made even flimsier. It finally passed in 2008.
GINA can be overridden by other laws. Under the Americans With Disabilities Act, employers have a right to obtain health information at certain times, such as when someone makes an accommodation request on the basis of disability. But because of the way our medical records systems are created and maintained, it’s almost impossible to get simple “health” information without also getting genetic information, and there’s a provision in GINA that says that if this happens, it’s okay. And GINA still isn’t used much. There were only about 24 serious cases brought under GINA since it passed in 2008 through 2015, according to Rothstein. In comparison, during the same period there were hundreds of thousands of cases brought under other sorts of anti-discrimination laws, like race, religion, sex, and disability.
So what’s next? From a legal standpoint, the focus seems to be on retaining what little protection we have instead of adding more. As for stronger protections for genetic privacy in the near future, Rothstein isn’t optimistic. “I don’t see that in the cards.”