In 2008, Congress passed the Genetic Information Nondiscrimination Act to prevent employers and insurance companies from discriminating against Americans based on their medical records.
Now a House committee is taking steps to remove GINA’s protections.
On March 8, the House Committee on Education and the Workforce narrowly approved HR 1313, which could allow employers to require genetic testing as part of a workplace wellness program. Employees could face financial penalties if they refused.
The idea behind this is to make employees healthier and reduce health care costs for companies. But medical ethicists argue that this is not only unethical, it’s scientifically incoherent. Simply put, an employer wouldn’t be able to glean anything particularly useful from commercially available genetic testing.
“There’s this notion that somehow we could give you a genetic test and find out your risk factors and control them or monitor them,” Arthur Caplan, the founding director of New York University’s Division of Medical Ethics told The Huffington Post. “That’s science that isn’t here yet.”
Dr. Lainie Ross, professor of clinical medical ethics at the University of Chicago Medicine, said, “We’re advancing in our understanding of genetics, but we’re nowhere near being able to say, ‘Because you have this gene, you definitely should take this medicine’ or not.”
Even Dr. Tom Price, the former orthopedic surgeon and Affordable Care Act opponent who now heads the Department of Health and Human Services, expressed reservations about HR 1313.
“I’m not familiar with the bill, but it sounds like there would be some significant concerns about it,” Price said Sunday on “Meet the Press.” “If the department’s asked to evaluate it, or if it’s coming through the department, we’ll be glad to take a look at it.”
The genetic testing industry is unregulated
In 2015, the Food and Drug Administration cautioned that some laboratory tests could harm patients because they led to false diagnoses and unnecessary treatments (the agency later withdrew its regulatory proposals and left lab test regulation up to President Donald Trump’s FDA commissioner and Congress).
In fact, in a study in which researchers gave nine labs a genetic variant and asked them to analyze it, the labs gave different answers 22 percent of the time.
“Even if everyone agrees that a genetic variant can cause disease, the actual risk to an individual of developing that disease is not that clear,” Heidi Rehm of Brigham and Women’s Hospital told the STAT health news site. “That risk depends on environmental factors as well as other genetic ones, but truthfully we don’t know what those factors are.”
Forced genetic testing could push highly personal, sensitive and potentially inaccurate information on individuals who may not want to know if they have specific health risks, particularly if they carry genetic mutations for serious or incurable conditions.
The dangers of inaccurate genetic testing
Genetics is based on probabilities, not certainties. So, although a test may find that you have an increased risk of breast cancer, to use one example, that does not mean you are certain to get the disease.
“It may push people into seeking out untested treatments or treatments that they really don’t need because they come from a low-risk family,” Ross said. “It’s not good medical practice.”
Then there’s the possibility that employers and insurance companies could use genetic information (which might not even accurately represent disease risk) to discriminate against employees and customers. Insurance companies could potentially charge people who show a risk for certain genetic conditions higher premiums, and unscrupulous employers would have the ability to make hiring and firing decisions based on employee health.
There’s also the dicey question of which genes employers and insurance companies might choose to look at.
Cherry-picking who gets insurance could potentially stigmatize one group of people.
“We all have health risks. We’re all going to die,” Ross said. “This is all about risk, and we want to share the risk.”
Employers can prioritize health without sacrificing privacy
Workplace wellness programs are popular (about half of U.S. companies with 50 or more employees had workplace wellness programs in place, according to a 2013 report from the nonpartisan Rand Corp. think tank), but there’s not much evidence that such programs improve employee health.
Most of the studies that do exist fail to prove causation, show only short-term effects or are written by the wellness industry, according to The New York Times. The more rigorous studies are more likely to show that wellness programs neither save money nor improve employee health.
That’s not to say health and wellness shouldn’t be employer priorities. But workplace wellness programs that incentivize and penalize employees based on their health are fundamentally unethical, according to Caplan.
“The notion that your boss is in the best position to monitor your health is morally tenuous,” he said. “For example, your boss doesn’t care if your job is stressing you out. They’re not going to fix that. They’re just going to tell you to lose weight.”
“If your boss really cares about your health, then they can build a gym and incentivize you to go down there when they give you that extra 30-minute break.”