The news came four years ago at the end of a casual phone call. Bill’s family had always thought it was a strange coincidence that his father and grandfather both had ALS. However, at the end of the status update, Bill’s brother revealed that he too had been diagnosed. It turns out that family trends are associated with genetic mutations. That meant Bill could also be at risk for the disease.
The ALS specialist ordered Bill to undergo a DNA test. While waiting for the results, I applied for long-term care insurance. Bill told me that if he develops ALS, he wants to make sure that the care he needs as his nerve cells die and his muscles atrophy won’t strain his family’s finances. When Bill learned he had the mutant strain, he informed his insurance agent, who was dealt another blow. “I don’t expect you to be approved,” he remembers her saying.
Bill doesn’t do that. have ALS. He is a healthy 60-year-old man who spends his weekends building his dream home by hand. Recent research on mutations like his suggests his genetics increase the likelihood of developing ALS about 25%on average. Most ALS cases are not genetic at all. Despite this, Bill felt like he was being treated as if he was already sick. (Bill asked to be identified only by his first name because he has not disclosed his situation to his employer and is concerned about facing backlash at work.)
What happened to Bill, and what has happened to dozens of other people whose experiences have been documented by disease advocates and social media, is completely legal. A gap in U.S. genetic antidiscrimination law requires life, long-term care, and disability insurance companies to disclose genetic risk factors for disease to their customers and deny coverage based on the resulting information. or increase prices). It doesn’t matter whether those customers learned about their mutation through a doctor-ordered test or a 23andMe kit.
For decades, researchers have worried that people would be targeted over their DNA, but they didn’t know how often it happened. At least a handful of Americans are currently experiencing what they claim is a form of discrimination. And as more people learn to sequence their genomes and researchers glean more information from the results, more people could be similarly targeted.
In the early 21st century, as scientists were mapping the immense complexity of the human genome, many thought This means that most diseases will eventually be found to be caused by individual genes. As a result, the researchers I was worried For example, you can be fired because of your genetics. Around the same time, federal research institutes sued by employee Perform genetic testing Testing potential employees for sickle cell disease without their explicit consent. In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers cannot make hiring or firing decisions based on DNA, and health insurance companies cannot decide whether to issue a policy. But lawmakers made a number of exceptions. Insurance companies that provide life, long-term care, or disability insurance It was done Take your DNA into consideration. They believe that when there are too many high-risk people in the insurance pool, raise prices for everyone. These exceptions are what allowed the insurance company to deny Bill long-term care insurance.
Incidents like Bill’s are exactly what critics of the consumer genetic testing industry feared when millions of people started spitting into test tubes. These cases have never been counted and are not well documented. But when I looked into disease advocacy groups and social media communities around ALS, breast cancer, and Huntington’s disease, I found many examples. Lisa Schlager, vice president of public policy for hereditary cancer advocacy group FORCE, said she collects reports on discrimination in living, long-term care, and disability insurance to assess the extent of the problem. told. Schlager referred me to a man who had his life insurance premiums increased and his coverage reduced because a genetic disorder called Lynch syndrome increases his risk for several cancers. Some other providers rejected his policy outright. Kelly Kushmer, 42, of South Carolina, told me that she was denied life insurance in 2013 after learning she carried the harmful BRCA2 gene. One woman I found on Reddit said she had never had her DNA tested, but showed me documents showing she was still being denied insurance — because her mother had a concerning gene. she said. (Some of the people I spoke to, like Bill, requested anonymity to protect their medical privacy.)
the study showed People will seek additional insurance if their genetic probability of getting sick or dying increases. “Life insurance companies carefully evaluate each applicant’s health and determine premiums and coverage based on life expectancy,” Jean Graeber, senior actuary at the American Council of Life Insurers, said in a statement. ” he said. “This process ensures fairness for both current and future policyholders while supporting our long-term financial stability.” But it also ensures that people have access to potentially life-saving health information. It also means you may avoid looking for it. In the research, consistently We found that there are concerns about discrimination It’s one of the most commonly cited reasons why people avoid taking a DNA test.
For some genetically related diseases, such as ALS and Huntington’s disease, knowing that a person has a deleterious mutation does not prevent them from developing the disease. But in some cases, knowing about a mutation can lower your chances of severe illness or death. For example, a BRCA mutation can affect someone: 85 percent There is a possibility of getting breast cancer, but evidence Our results show that mutation testing in women can encourage screening and preventive surgery that can detect or prevent the disease, contributing to lower cancer mortality rates. Kashmar said the first tests after discovering her BRCA2 mutation revealed she already had breast cancer. If she hadn’t had the genetic test, she might have been able to get insurance, but it would have been a worse choice for the insurance company. Although she has now been cancer-free for 11 years, she said she has no intention of applying for insurance again.
Even employers who must comply with GINA may soon be able to hire or fire based on certain genetic risk factors. Laura Hartcher, a genetic counselor and research director in the Human Genetics Program at Sarah Lawrence College, said some researchers now claim to have two copies of the book. APOE4 A mutation that increases the chance of developing Alzheimer’s disease by about 60% corresponds to stage 0 Alzheimer’s disease. Do GINA protections apply even if having the gene is considered equivalent to a diagnosis? The Affordable Care Act prevents health insurance companies from discriminating based on: existing symptomsHowever, employers and other types of insurance companies are not covered. (ACA may change dramatically And the Americans with Disabilities Act may not apply in the gray area between what is considered an early symptom of a disease and what is 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 Association of Genetic Counselors, are working in several states to pass legislation to bridge the gap left by GINA . florida We did that in 2020, with little success so far.
Hartcher said genetic testing is just starting to become commonplace in the United States, and insurance companies may not bother asking about it. Anecdotes about groups like Schlager’s are increasingly being heard these days. Anya Prince, a professor at the University of Iowa School of Law, said, “People are so worried about genetic discrimination that they don’t enroll in research studies or don’t accept medical recommendations because they’re worried about what will happen to their insurance.” They are refusing treatment.” he said to me. Carolyn Applegate, a genetic counselor in Maryland, says that when patients come to her with concerns about a genetic disease, she typically first arranges for all the additional coverage she thinks they might need and then studies their DNA. He said he would advise her to hand him over to the police.
So far, these unintended consequences of genetic testing appear to be manifesting in people at risk for rare diseases associated with single genes, which together affect about 6 percent of the world’s population. . According to some estimates. However, the main causes of death, such as heart disease and diabetes, are affected by: still unknown number Genetics plays a big role, along with lifestyle and environmental factors such as diet, stress, and air quality. Researchers have attempted to understand this complex interaction of genes through polygenic risk scores. statistical modeling For example, to predict that someone is slightly more likely to develop Alzheimer’s disease. Many experts believe that these scores are limited “In the future, genetic tests will become more predictive, more useful, and more widespread,” Prince said. Already, if we look closely enough, we can see that almost everyone has some risk in their genome.
Overall, this information is valuable to companies, said Nicholas Papageorge, an economics professor at Johns Hopkins University. Insurance companies want to sell insurance policies at the highest possible price while reducing their exposure. Knowing even a little bit about the probability that someone will someday develop a debilitating or fatal disease could help a company stay ahead of the competition. As long as the predictions built into polygenic risk scores are accurate at least a few percent of the time, they could help insurers make more targeted decisions about who to cover and what to charge. there is. As we learn more about how genes influence everyone’s health, insurance companies may use that information to make decisions about covering more people.
Bill doesn’t yet know whether he will develop ALS. of average age The age of onset is between 40 and 60 years, but many people do not develop symptoms until they are in their 70s. Without long-term care insurance, Bill may not be able to afford full-time care should he someday need it. As the disease progresses, people with ALS lose the ability to walk, talk, and chew. “We move people to the bathroom, we change sheets, we change toilets,” Bill said. “It’s scary to think that I’m going to have to burden my wife with all of this.”
Cases like Bill’s could soon become even more common. Scientists’ understanding of the human genome is still evolving, so no one can predict all the possible consequences of decoding it. As more information is mined from the genome, interest in its secrets will surely grow beyond risk-averse insurance companies. If consumer DNA testing companies like 23andMe change their long-standing privacy policies, go bankrupt, or are sold to unscrupulous buyers, more companies could gain access to individuals’ genetic risk profiles. There is a possibility that it will happen. (23andMe does not share customer data with insurance companies, and the company’s CEO told me it is not currently responding to acquisition offers by third parties.) Papageorge said, for example, people at risk for Alzheimer’s disease He said he could imagine scammers targeting . This is because they often target older people who may fall for the ruse out of confusion. We all have a defect somewhere in our genome. The question is, who will use that information?
