As morbid as it sounds, life insurance companies want to know how long you’ll be around, and figuring that out involves a complex underwriting assessment of your “risks” — physical health, genetic profile, and perhaps even your social media activity, all to assess whether you qualify and how much you end up paying for coverage.
“Genetic tests conducted at your doctor will go on your medical file with the Medical Information Bureau (MIB), which is fair game for life insurance companies to review in underwriting. It’s not unheard of for people to get declined due to having certain genes that increase risk of cancer,” said John Holloway, an insurance agent and co-founder of NoExam.com, in an email to Reviews.com.
Direct-to-consumer (DTC) genetic testing, or genetic testing outside your doctor’s care, is on the upswing in the U.S., with a 2018 study published on BioMedCentral.com finding more and more people are sending DNA samples to companies like 23andMe, Ancestry.com, and FamilyTreeDNA.
In fact, questions about how these tests might affect an individual’s life insurance experience are emerging, and the answers are murky. Experts say it depends on many factors, including the type of test you take.
Before you sign or send anything, read all the fine print you can find
Along with most law enforcement agencies, life insurers are not governed by the medical information protections outlined by HIPAA (Health Insurance Portability and Accountability Act), and they don’t fall under the Genetic Nondiscrimination Act (GINA) (along with disability and long-term life insurance) criteria, which keeps employers and health insurers from discriminating against you and denying you employment or coverage based on your genetic data. In certain cases, these direct-to-consumer genetic testing companies can technically and legally choose to sell your data, use it for research, or hand it off to law enforcement or government entities, as a Forbes contributor wrote about in 2018. One company — Family Tree DNA — acknowledged providing access to its user genealogy database to the FBI, as BuzzFeed News reported earlier this year. Family Tree DNA president and founder Bennett Greenspan said in a March news release the company stands firm in its ability to help “crowd-source crime-solving.”
“When opting into giving our data to research, we think of it as an altruistic act in helping the world. We don’t necessarily get to know where it’s going — maybe your data is helping treat some disease or create some medicine. But maybe it’s going to be research on something you actually object to — like testing for intelligence and race.”
23andMe, which partnered with GlaxoSmithKline last year in an agreement to conduct research, says users can exercise some autonomy in where their information will go by opting in or out of sharing for research purposes. The company also states it “will not provide any person’s data (genetic or non-genetic) to an insurance company or employer.”
The thing is, while 23andMe says it won’t hand your genetic data to life insurers, you might have to.
“Since GINA does not apply to life insurance, companies can technically ask about genetic testing on applications. Purposely withholding relevant facts from a life insurance application is material misrepresentation and can be cause for the insurance company to rescind the policy or deny a claim.”
Insurance agent and co-founder of NoExam.com
You might be wondering: Do DTC genetic tests have the same scientific power to evaluate whether you’re at risk for a certain disease as those ordered by a physician? And how do life insurance companies see them?
In general, if you’re trying to meet distant relatives, then a DTC genetic test could help get you there. Determining what diseases you’re at risk for, on the other hand, is a different story.
DTC versus clinical-grade genetic tests
Dr. Jonathan Berg, an associate professor at The University of North Carolina at Chapel Hill’s department of genetics, says the reliability of these tests depends on the clinical question being asked and varies greatly from one condition to the next.
“If you are asking about a predictive polygenic risk score, then the answer is that these scores have typically been shown to be statistically significant across a population of cases and controls, but they generally aren’t much more predictive for an individual than traditional risk factors (family history, age, smoking status, BMI, etc.) except for perhaps a small percentage of extreme outliers,” he said. “And in those cases, it isn’t clear that prediction necessarily equals prevention,” Berg said in an email to Reviews.com.
When asked about the benefits of DTC genetic tests, Berg said it’s in the eye of the beholder.
“Some people will get some personal satisfaction from the information,” he said. “ If you asked, “Do DTC genetic tests offer any health benefits” the answer is no, we don’t currently have any good evidence that DTC genotyping tests for prediction of common multifactorial disease risks have substantial clinical benefits.”
How are DTC genetic tests regulated?
While you can check for clinical and analytical validity yourself, the U.S. National Library of Medicine says finding stamps of approval from federal organizations, like the Clinical Laboratory Improvement Amendments, when it comes to DTC genetic testing, might be tough. The U.S. Food and Drug Administration (FDA) serves as a watchdog over some DTC genetic testing companies, especially those that claim to provide medical insight (it doesn’t look at ancestry tests).
In 2017, the FDA officially granted 23andMe the right to market its ability to determine a consumer’s predisposition to 10 diseases or conditions. (Some of which could really pique the interest of your life insurer as some of the leading causes of death in the U.S., like certain types of cancers, Parkinson’s, and Alzheimer’s diseases.) However, the FDA, too, states that genetic variants aren’t the only players at work in disease development — lifestyle and environmental factors have impacts, too.
Hasson says the marketing tactics are changing beliefs about genetics.
“Because of the way this is marketed, it’s really increasing ideas about genetic determinism that are inaccurate,” she said. “They heighten the thinking that there are genes for intelligence, talents, sports ability, and reinforce the belief that race is genetic, which is an outdated, incorrect idea.”
What should I do if I’m applying for a life insurance policy?
Jack Dolan, media relations vice president at the American Council of Life Insurers (ACLI), told Reviews.com via email these DTC genetic tests aren’t that reliable.
“They test for three different mutations of BRCA gene. There are, in fact, a thousand different BRCA1 mutations that cause breast cancer. They’re testing for a tiny fraction.”
Using the same breast cancer example, 23andMe acknowledges its test may not give you all the answers:
The BRCA1/BRCA2 (Selected Variants) Genetic Health Risk Report does not describe an individual’s overall risk for developing any type of cancer and is not a substitute for consultation with your doctor or a genetic counselor about recommended screenings.”
Dolan says you “need to go to your doctor or a genetic counselor and get the right genetic test and information.” Both Dolan and Holloway agree that life insurers can only see information on your actual medical record, which wouldn’t include results from DTC genetic tests.
Perhaps there’s no good way to answer whether DTC genetic tests will affect your life insurance experience. Since insurance experts recommend honesty when it comes to reporting on genetic testing in general, it’s still best to weigh the pros and cons before you decide to peek into lineage or disease predispositions without a physician’s guidance. Because in the end, every provider is different, and you really don’t know how it’ll respond to your results from a genetic test — DTC or otherwise, especially if an underwriting agency were to do some digging and discover you misrepresented known information on an application. What we do know is you can be denied, non-renewed, or see higher premiums for having a genetic risk for certain diseases.
There might also be a system of checks and balances in place. Holloway says most applications have a dedicated section for agents to leave notes. Here, the agent can explain the type of genetic test, and that this then helps underwriters to determine whether and how the “yes” you clicked for genetic testing affects your risk profile.
DTC genetic tests: Looking forward
Insurance aside, one variable that rings true in this whole equation is that there are a lot of unknowns. And just like the information you share online, sharing your genetic data in this manner comes with a level of permanence. In sharing your genetic data, you’re also sharing your family’s, and once it’s out there, it can be tough to retrieve — even with scrubbing and removal options offered by several DTC genetic testing companies. Consumer Reports found that if you’ve consented to handing your data over for research purposes to 23andMe and want to remove your profile, the company can’t technically remove any DNA previously given or already used in certain studies. But if you do ask for removal, 23andMe won’t continue giving your data to research.
As for the future — the DNA sample won’t change but science will.
“We don’t know — even in five years, what kinds of things people will be able to do or learn from our data,” Hasson said. “Genetic science is changing so quickly, and there are things being done now that we wouldn’t have been able to foresee before.”
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