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.
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.
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.”
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Have you heard about the controversial House bill that’s been quietly moving through Congress? It’s called HR 1313 and it’s got privacy advocates seriously worried about your genetic information. This legislation could fundamentally change what employers can demand from their workers regarding genetic testing and health information.
What Exactly Is HR 1313?
HR 1313 is a bill that was approved by a House committee with all 22 Republicans supporting it and all 17 Democrats opposing it What makes this bill so controversial? It would essentially allow companies to require employees to undergo genetic testing or face financial penalties that could amount to thousands of dollars
The most troubling part? The bill would let employers see that genetic and other health information, which is currently prohibited by existing legislation.
How Does This Bill Get Around Current Protections?
Currently, the Genetic Information Nondiscrimination Act (GINA) of 2008 protects workers from having to share genetic information with employers. But HR 1313 includes specific language stating that GINA and other protections don’t apply when genetic tests are part of a “workplace wellness” program.
Basically, the bill creates a huge loophole in existing protections by:
- Explicitly exempting workplace wellness programs from GINA
- Allowing employers to demand genetic testing from personnel
- Permitting companies to impose financial penalties on those who refuse
The Financial Impact on Workers Who Opt Out
If you’re thinking “I’ll just say no,” be prepared for the consequences. Under this legislation, workers who choose to protect their genetic privacy could face:
- Surcharges of up to 30% or more on health insurance costs
- For a family health plan, this could amount to over $2,000 in annual fines
- Workers at companies without health insurance could see these fines directly deducted from their paychecks
Imagine having to choose between revealing your most intimate genetic information or paying thousands extra each year. That’s the reality this bill could create for American workers.
Beyond Genetics: A Broader Invasion of Privacy
It’s not just genetic information that’s at stake. HR 1313 would also permit employers to question staff about:
- Medical histories
- Pregnancy plans
- Mental health issues
- Disabilities
- Other sensitive health information
All of this would be allowed under the guise of “voluntary” workplace wellness programs. But how voluntary is a program if refusing to participate costs you thousands of dollars?
The Arguments For and Against HR 1313
What Supporters Say
Backers of the Republican-sponsored bill argue that it will:
- Expand access to beneficial wellness programs
- Help reduce healthcare costs
- Provide better health outcomes for workers
GOP representatives who voted for the bill claim it simply streamlines regulations and encourages participation in wellness initiatives.
What Critics Say
Over 50 health advocacy groups have written to Congress urging rejection of the bill. Critics point out that:
- Evidence suggests wellness programs fail to significantly improve worker health
- The potential for discrimination and abuse is extremely high
- Access to genetic profiles could enable bias, harassment, and unfair treatment
The American Society of Human Genetics has expressed serious concerns, warning that HR 1313 would “allow employers to ask employees invasive questions” about genetic tests while imposing “stiff financial penalties” on those who choose privacy.
The History Behind This Push for Genetic Testing
This attempt to expand employer access to genetic data didn’t come out of nowhere. The framework was established through previous policy decisions:
- The Affordable Care Act empowered employers to implement workplace wellness programs with incentives
- However, the ACA still maintained certain limitations on what information could be demanded
- The business lobby has been working to remove these restrictions for years
With Republicans holding majorities in Congress when this bill was introduced, advocates for expanded employer access to health information saw an opportunity to advance their agenda.
What Could This Mean for the Average Worker?
If HR 1313 were to become law, here’s how it might affect you:
- Your employer could require you to take genetic tests revealing predispositions to certain diseases
- You might have to disclose family medical history, including conditions like cancer, heart disease, or mental illness
- Refusing could cost you thousands of dollars annually
- Your genetic information could potentially be used against you in subtle ways
While the bill’s supporters claim discrimination would still be illegal, the reality is that once an employer has access to genetic information, it becomes much harder to prove when that information influences decisions.
The Broader Implications for Privacy Rights
The concerns about HR 1313 extend beyond just workplace issues. The bill raises fundamental questions about:
- The ownership of genetic information
- The boundaries between employment and personal privacy
- The coercive power of financial penalties in “voluntary” programs
I believe that genetic data provides vital insights for personalized medicine and research. But nobody should be forced to share this sensitive information with their employer just to avoid financial penalties.
Where Does the Bill Stand Now?
HR 1313 was introduced and referred to committee during a previous Congress. For it to become law, it would need to:
- Pass the full House of Representatives
- Pass the Senate
- Be signed by the President
Proponents might attempt to include it in larger “must-pass” healthcare legislation to improve its chances of success.
What Can You Do?
If you’re concerned about this potential invasion of genetic privacy, here are some steps you can take:
- Contact your representatives to voice your opposition
- Raise awareness about the bill among friends, family, and colleagues
- Support privacy advocacy groups fighting against genetic discrimination
- Stay informed about the status of this and similar legislation
Why This Matters Even Beyond the Workplace
The precedent set by allowing employers to demand genetic information could have far-reaching consequences. Today it’s your employer; tomorrow it could be insurance companies, financial institutions, or other organizations demanding access to your genetic blueprint.
We all have a stake in protecting genetic privacy. Your DNA contains the most personal information possible – information about diseases you might develop, traits you carry, and even information about your relatives.
Final Thoughts
Genetic testing has tremendous potential to improve healthcare and help us better understand ourselves. But that potential is best realized when people can choose to participate without coercion or fear of discrimination.
HR 1313 represents a dangerous step backward in privacy protections that could fundamentally alter the relationship between workers and employers. By allowing companies to demand genetic information under the threat of financial penalties, the bill undermines the very concept of informed consent.
Republicans Give Employers Right To Genetically Test Workers
FAQ
Why is genetic testing not recommended?
Some disadvantages, or risks, that come from genetic testing can include: Testing may increase your stress and anxiety. Results in some cases may return inconclusive or uncertain. Negative impact on family and personal relationships.
Why do some parents not want to use genetic testing?
Typically, this was because parents believed the testing was unlikely to change their child’s current treatment or ultimate outcome because they felt their child’s illness was not likely to be genetic or because they perceived genetic testing as a realm separate from regular clinical care.
