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When Mary-Claire King discovered the first gene linked to hereditary breast cancer in 1990, she also got to decide its name. She settled on the four letters BRCA, which had three distinct meanings. The name paid homage to UC Berkeley, where King worked at the time; more to the point, it was a nod to Paul Broca, the 19th-century French physician whose work established a link between family history and breast cancer. It was also an abbreviation for breast cancer.

A few years after King discovered BRCA1, a second BRCA gene, BRCA2, was identified. Together, they now have more name recognition than probably any other gene, their profile boosted by research that has shown staggering effects on cancer risk. Awareness campaigns followed. A 2013 New York Times op-ed in which Angelina Jolie revealed she’d had a preventive double mastectomy because of her own BRCA mutation drove many women to seek DNA tests themselves. The BRCA genes became inextricably linked with breasts, as much as the pink ribbons that have become an international symbol of breast cancer. And in driving more women to find out if they have BRCA mutations, it’s helped to greatly reduce the risk of hereditary breast cancer.

But in the three decades since the genes were discovered, scientists have learned that BRCA mutations can also lead to cancer in the ovaries, the pancreas, and the prostate. More recently, they have been linked with cancers in other parts of the body, such as the esophagus, stomach, and skin. As many as 60 percent of men with changes in BRCA2 develop prostate cancer, yet men are generally far less aware than women that BRCA mutations can affect them at all.

“It’s a branding problem,” Colin Pritchard, a professor of laboratory medicine and pathology at the University of Washington, told me. Men with family histories of breast cancer may not realize that they should get screened. Physicians, too, lack awareness of which men should get tested, and what steps to take when a mutation is found. Now Pritchard and other researchers are working to rebrand BRCA and the syndrome associated with it so that more men and their doctors consider testing.

Normally, the BRCA genes produce proteins that help repair damaged DNA throughout the body. Most people who carry mutations that impair the gene’s function are diagnosed with hereditary breast and ovarian cancer syndrome. (Having HBOC means a person is at increased risk for cancer, not that they already have an illness.) Most breast-cancer cases have no known hereditary link, but more than 60 percent of women with a harmful BRCA1 or BRCA2 mutation will develop breast cancer, compared with about 13 percent of the wider female population. Men, of course, can get breast cancer too, but it's rare, even among BRCA-mutation carriers.

[Read: Cancer supertests are here]

The full significance of the link between BRCA mutations and pancreatic and prostate cancer has become clear only recently—perhaps in the past decade, said Pritchard. The exact risk these mutations impart to men varies widely in studies. But it’s clearly significant: Not only are men with BRCA mutations more likely to develop prostate cancer, they are also more likely to develop the more aggressive forms of the disease.

Roughly one in 400 people carry a harmful mutation in BRCA1 or BRCA2, and half of them are men. But women are far more likely to have been tested for the mutations—up to 10 times as likely, according to one study. “Beyoncé’s dad was the only man that I had ever heard of who had it,” Christian Anderson, a 46-year-old social-sciences professor in Washington State who carries a BRCA2 mutation, told me. Anderson got tested after his sister was diagnosed with breast cancer, but countless men like him go undetected. Only about half of Americans get an annual physical, and doctors aren’t always aware of BRCA-screening recommendations for men. Many men who do test for a BRCA mutation report doing it for their daughters, and studies have shown that they tend to be confused about their risks of developing cancer themselves.

BRCA-awareness campaigns have led many women to get tested; in the two weeks after Angelina Jolie’s viral op-ed, researchers found that BRCA-testing rates went up by 65 percent. In that case, more people may gotten tested than needed to, but in general, the rise in cancer screenings and elective surgical interventions have helped reduce the rates of deaths from breast and ovarian cancers. Education about the genes’ links to other cancers could do the same for men. To that end, Pritchard argued in a 2019 Nature commentary that Hereditary Breast and Ovarian Cancer syndrome should be renamed King Syndrome after Mary-Claire King. “We need to really rethink this if we're going to educate the public about the importance of these genes for cancer risk for everyone, not just women,” he told me.

[Read: I’ll tell you the secret of cancer]

As understanding of BRCA’s risks for men has grown, Pritchard’s idea has started to catch on. King, who is now a professor of genome sciences and medicine at the University of Washington, demurred when I asked her whether the syndrome associated with the BRCA genes should be renamed after her, but agreed that awareness campaigns have focused too narrowly on breasts and ovaries. “We need to bring this awareness to men in the same way that we have for 30 years now to women,” she told me.

How exactly Pritchard’s plan might be put into action is unclear. Gene names are overseen by an international committee and rarely changed. That’s part of why Pritchard is suggesting that the name of the syndrome associated with BRCA mutations become King Syndrome—no single governing body oversees that. Recently, ClinGen, an international group of researchers that works to parse the medical significance of genes, recommended that HBOC be rechristened BRCA-related cancer predisposition. (Pritchard told me he thinks that name isn’t quite as “catchy” as King Syndrome.)

Uncoupling the syndrome associated with BRCA mutations from breasts would likely be only the first step in getting more at-risk men screened for cancer. It would also be an important step in understanding the full impact of BRCA mutations on men. Because fewer men than women have been tested for BRCA mutations, scientists still don’t have a complete picture of their risk. For example, Pritchard told me, it’s only as more attention has been drawn to male BRCA risk that researchers have discovered mutations are linked to especially aggressive forms of prostate cancer. Penn Medicine recently launched a program dedicated to men and BRCA in part to continue this sort of research.

[Read: Scientists have been studying cancers in a very strange way for decades]

BRCA’s name is a legacy of a time when scientists thought genetics would offer a simple way to diagnose and treat disease—that one specific mutation would point definitively to one specific cancer. But today, “the idea that a gene would only affect one type of cancer risk is probably outmoded,” Pritchard said. The more scientists explore the human genome, the more complex its connections to health appear. It turns out that when genes don’t work like they should, the possible consequences may very well be infinite.

Today The Atlantic is launching Being Human, a new section and newsletter at TheAtlantic.com as part of a major expansion of its writing and reporting on health. The name describes The Atlantic’s wide-ranging approach to health coverage, on what it means to live a life bound up in a body and conducted by a mysterious, fallible brain.

The Atlantic grew its health-reporting team significantly ahead of this launch, and Being Human will broaden the magazine’s existing coverage of the ideas and issues that readers encounter every day: wellness culture, human behavior, mortality and disease, and other mysteries of the body and the mind.

Editor in chief Jeffrey Goldberg said of the expansion: “The Atlantic’s health team produces the smartest, most analytically acute, and best-written stories of any journalism outfit nationally, and with this new expansion, we’re going to be comprehensive in a way we haven’t been before. In an age of mass confusion––not just about health, of course––I think our team is perfectly positioned to bring clarity to this important coverage area.”

Being Human launches with new reporting on the BRCA gene needing a rebrand, by Kristen V. Brown; how the broad support for vaccines in America may be tested by the incoming Trump administration, by Daniel Engber; and the way people are thinking about deodorant all wrong, from Yasmin Tayag.

Find more stories at the Being Human section, and please reach out with questions or interest in interviewing our writers about their reporting.

Press Contact: Anna Bross | press@theatlantic.com

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 preexisting conditions, but not employers and other types of insurers. (The ACA may change dramatically under the coming Trump presidency anyway.) And the Americans With Disabilities Act might not apply to the gray area between what might be viewed as an early manifestation of a disease and the stage when it’s considered a disability. FORCE and other advocacy groups—including the ALS Association and the Michael J. Fox Foundation—as well as members of the National Society of Genetic Counselors, are working in a few states to pass laws that close gaps left by GINA, as Florida did in 2020, but so far they have been mostly unsuccessful.

Genetic testing has only just become common enough in the U.S. that insurers might bother asking about it, Hercher said. Recently, groups like Schlager’s have been hearing more and more anecdotes. “People are so worried about genetic discrimination that they are failing to sign up for research studies or declining medically recommended care because of the concerns of what could happen to their insurance,” Anya Prince, a professor at the University of Iowa College of Law, told me. Carolyn Applegate, a genetic counselor in Maryland, told me that when patients come to her worried about a hereditary disease, she typically advises them to line up all the extra coverage they might need first—then hand over their DNA to a lab.

So far, these unintended consequences of genetic testing seem to be manifesting for people with risk for rare diseases linked to single genes, which, combined, affect about 6 percent of the global population, according to one estimate. But the leading killers—heart disease, diabetes, and the like—are influenced by a yet unknown number of genes, along with lifestyle and environmental factors, such as diet, stress, and air quality. Researchers have tried to make sense of this complex interplay of genes through polygenic risk scores, which use statistical modeling to predict that someone has, say, a slightly elevated chance of developing Alzeheimer’s. Many experts think these scores have limited predictive power, but “in the future, genetic tests will be even more predictive and even more helpful and even more out there,” Prince said. Already, if you look deep enough, almost everyone’s genome registers some risk.

[Read: What happens when you’re convinced you have bad genes]

In aggregate, such information can be valuable to companies, Nicholas Papageorge, a professor of economics at Johns Hopkins University, told me. Insurers want to sell policies at as high a price as possible while also reducing their exposure; knowing even a little bit more about someone’s odds of one day developing a debilitating or deadly disease might help one company win out over the competition. As long as the predictions embedded in polygenic risk scores come true at least a small percentage of the time, they could help insurers make more targeted decisions about who to cover and what to charge them. As we learn more about what genes mean for everyone’s health, insurance companies could use that information to dictate coverage for ever more people.

Bill still doesn’t know whether he will ever develop ALS. The average age of onset is 40 to 60, but many people don’t show symptoms until well into their 70s. Without long-term-care insurance, Bill might not be able to afford full-time nursing care if he someday needs it. People who do develop ALS become unable to walk or talk or chew as the disease progresses. “Moving people to the bathroom, changing the sheets, changing the bedpans,” Bill said—“I dread the thought of burdening my wife with all of those things.”

Cases like Bill’s could soon become more common. Because scientists’ understanding of the human genome is still evolving, no one can predict all of the potential consequences of decoding it. As more information is mined from the genome, interest in its secrets is sure to grow beyond risk-averse insurers. If consumer-facing DNA-testing companies such as 23andMe change their long-standing privacy policies, go bankrupt, or are sold to unscrupulous buyers, more companies could have access to individuals’ genetic risk profiles too. (23andMe told me that it does not share customer data with insurance companies and its CEO has said she is not currently open to third-party acquisition offers.) Papageorge told me he could imagine, say, scammers targeting people at risk for Alzheimer’s, just as they often target older people who may fall for a ploy out of confusion. All of us have glitches somewhere in our genome—the question is who will take advantage of that information.