Genetic Discrimination Is Coming for Us All
The news came four years ago, at the end of a casual phone call. Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS. But at the end of a catch-up, Bill’s brother revealed that he had a diagnosis too. The familial trend, it turned out, was linked to a genetic mutation. That meant Bill might also be at risk for the disease.
An ALS specialist ordered Bill a DNA test. While he waited for results, he applied for long-term-care insurance. If he ever developed ALS, Bill told me, he wanted to ensure that the care he would need as his nerve cells died and muscles atrophied wouldn’t strain the family finances. When Bill found out he had the mutation, he shared the news with his insurance agent, who dealt him another blow: “I don’t expect you to be approved,” he remembers her saying.
Bill doesn’t have ALS. He’s a healthy 60-year-old man who spends his weekends building his dream home by hand. A recent study of mutations like his suggests that his genetics increase his chances of developing ALS by about 25 percent, on average. Most ALS cases aren’t genetic at all. And yet, Bill felt like he was being treated as if he was already sick. (Bill asked to be identified by his first name only, because he hasn’t disclosed his situation to his employer and worried about facing blowback at work too.)
What happened to Bill, and to dozens of other people whose experiences have been documented by disease advocates and on social media, is perfectly legal. Gaps in the United States’ genetic-nondiscrimination law mean that life, long-term-care, and disability insurers can obligate their customers to disclose genetic risk factors for disease and deny them coverage (or hike prices) based on the resulting information. It doesn’t matter whether those customers found out about their mutations from a doctor-ordered test or a 23andMe kit.
For decades, researchers have feared that people might be targeted over their DNA, but they weren’t sure how often it was happening. Now at least a handful of Americans are experiencing what they argue is a form of discrimination. And as more people get their genomes sequenced—and researchers learn to glean even more information from the results—a growing number of people may find themselves similarly targeted.
When scientists were mapping the immense complexity of the human genome around the turn of the 21st century, many thought that most diseases would eventually be traced to individual genes. Consequently, researchers worried that people might, for example, get fired because of their genetics; around the same time, a federal research lab was sued by its employees for conducting genetic tests for sickle-cell disease on prospective hires without their explicit consent. In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers couldn’t decide to hire or fire you, and health insurers couldn’t decide whether to issue a policy, based on DNA. But lawmakers carved out a host of exceptions. Insurers offering life, long-term-care, or disability insurance could take DNA into account. Too many high-risk people in an insurance pool, they argued, could raise prices for everyone. Those exceptions are why an insurer was able to deny Bill a long-term-care policy.
[Read: The loopholes in the law prohibiting genetic discrimination]
Cases like Bill’s are exactly what critics of the consumer-genetic-testing industry feared when millions of people began spitting into test tubes. These cases have never been tallied up or well documented. But I found plenty of examples by canvassing disease-advocacy organizations and social-media communities for ALS, breast cancer, and Huntington’s disease. Lisa Schlager, the vice president of public policy at the hereditary-cancer advocacy group FORCE, told me she is collecting accounts of discrimination in life, long-term-care, and disability insurance to assess the extent of the problem; so far, she has about 40. A man Schlager connected me with, whose genetic condition, Lynch syndrome, increases the risk for several cancers, had his life-insurance premium increased and coverage decreased; several other providers denied him a policy altogether. Kelly Kashmer, a 42-year-old South Carolina resident, told me she was denied life insurance in 2013 after learning that she had a harmful version of the BRCA2 gene. One woman I found via Reddit told me she had never tested her own DNA, but showed me documents that demonstrate she was still denied policies—because, she said, her mom had a concerning gene. (Some of the people I spoke with, like Bill, requested not to be identified in order to protect their medical privacy.)
Studies have shown that people seek out additional insurance when they have increased genetic odds of becoming ill or dying. “Life insurers carefully evaluate each applicant’s health, determining premiums and coverage based on life expectancy,” Jan Graeber, a senior health actuary for the American Council of Life Insurers, said in a statement. “This process ensures fairness for both current and future policyholders while supporting the company’s long-term financial stability.” But it also means people might avoid seeking out potentially lifesaving health information. Research has consistently found that concerns about discrimination are one of the most cited reasons that people avoid taking DNA tests.
For some genetically linked diseases, such as ALS and Huntington’s disease, knowing you have a harmful mutation does not enable you to prevent the potential onset of disease. Sometimes, though, knowing about a mutation can decrease odds of severe illness or death. BRCA mutations, for example, give someone as much as an 85 percent chance of developing breast cancer, but evidence shows that testing women for the mutations has helped reduce the rate of cancer deaths by encouraging screenings and prophylactic surgeries that could catch or prevent disease. Kashmer told me that her first screening after she discovered her BRCA2 mutation revealed that she already had breast cancer; had she not sought a genetic test, she may have gotten a policy, but would have been a much worse bet for the insurer. She’s now been cancer-free for 11 years, but she said she hasn’t bothered to apply for a policy again.
[Read: Remember that DNA you gave 23andMe?]
Even employers, which must adhere to GINA, might soon be able to hire or fire based on certain genetic risk factors. Laura Hercher, a genetic counselor and director of research at the Sarah Lawrence College Human Genetics Program, told me that some researchers are now arguing that having two copies of the APOE4 mutation, which gives people about a 60 percent chance of developing Alzheimer’s, is equivalent to a Stage Zero of the disease. If having a gene is considered equivalent to a diagnosis, do GINA’s protections still apply? The Affordable Care Act prevents health insurers from discriminating based on