As morbid as it sounds, life insurance companies estimate longevity by reviewing information you disclose and what’s in your medical records, and—where permitted by law—any known genetic test results documented there. Whether genetic information can be used depends heavily on where you live. In the U.S., federal GINA protections do not apply to life insurance; state rules vary. By contrast, the UK’s government–industry Code largely bars predictive genetic results in life underwriting, Canada’s national law prohibits requiring or using genetic test results, and Australia operates a moratorium that limits use below specified sums insured (UK Code; Canada GNDA; Australia FSC Standard No. 11).
“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 has a large user base but slower growth compared with its 2017–2018 surge. By early 2019, more than 26 million people had taken at‑home ancestry tests, and subsequent adoption decelerated as privacy and security concerns gained attention (MIT Technology Review). Major providers still serve tens of millions, but the market has matured, with firms emphasizing research partnerships and health integrations over pure DTC volume.
If you’ve ever seen one of the TV ads, you might not realize these consumer reports are not a substitute for medical care. Regulators caution that health‑risk reports should not drive screening or treatment without clinician guidance and confirmatory testing (FDA consumer genetic testing; NHGRI on DTC testing).
In fact, questions about how these tests intersect with life insurance now have clearer, jurisdiction‑specific answers. The UK Code allows use of only one predictive test—Huntington’s disease—and only when life cover exceeds £500,000; insurers cannot require applicants to undergo genetic testing (ABI Code). Canada’s Genetic Non‑Discrimination Act makes it illegal to require or use genetic test results to obtain insurance and was upheld nationally by the Supreme Court in 2020 (SCC 2020). Australia’s industry moratorium bars adverse use of predictive results at or below specified sums insured (applicants may volunteer favorable results). In the U.S., GINA does not cover life insurance and state laws create a patchwork of restrictions (NHGRI on genetic discrimination; NCSL state overview).
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 underwriting limits in HIPAA’s health‑plan provisions, and GINA does not apply to life, disability, or long‑term care insurance. Major DTC providers publish detailed law‑enforcement policies and transparency updates: 23andMe and Ancestry say they have not produced customer genetic data in response to law‑enforcement requests and will require valid legal process, while MyHeritage prohibits investigative use outright; FamilyTreeDNA allows investigative matching only for users who opt in (23andMe transparency; Ancestry guidelines; MyHeritage policy; FamilyTreeDNA LE guide). Earlier reporting highlighted cooperation in limited circumstances, but today companies emphasize opt‑in controls and narrow compliance. Security incidents also matter: a credential‑stuffing attack disclosed by 23andMe exposed profile/relationship data from approximately 6.9 million users in 2023, underscoring the importance of strong passwords and multi‑factor authentication (23andMe security update).
Staying abreast of the company’s privacy policy (and terms of service) is one way to understand where your data may go, but also check applicable laws. State privacy statutes increasingly require explicit, opt‑in consent and disclosures for genetic data. Examples include California’s Genetic Information Privacy Act (GIPA) and Washington’s My Health My Data Act, both of which impose consent, access, deletion, and security obligations that affect any research sharing or partnerships.
Katie Hasson, program director on genetic justice for the Center for Genetics and Society, says that even if you understand the privacy policy, these DTC genetic testing companies can change them at will.
“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.” Beyond that headline partnership, company filings describe a shift away from strict exclusivity to non‑exclusive research services and trial‑recruitment work, all dependent on separate, explicit research consent (SEC filings; 23andMe Privacy Statement). U.S. regulators have also tightened expectations for health‑data handling and breach response that apply to many DTC genomics providers and their partners (FTC Health Breach Notification Rule).
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.”
John Holloway
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, DTC ancestry tests can help connect relatives, but for health decisions, regulators and genomics experts urge caution. Many DTC health‑risk reports cover only selected variants and are not diagnostic; a “negative” result does not eliminate risk, and any actionable finding should be confirmed in a clinical laboratory and discussed with a clinician (FDA; NHGRI). Polygenic risk scores show population‑level associations but add modest predictive value for many individuals and vary by ancestry (NHGRI PRS fact sheet).
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) regulates DTC health‑risk and certain pharmacogenetic reports as medical devices, with defined special controls for consumer comprehension and labeling (see the Genetic Health Risk classification at 21 CFR 866.5950). In 2024, FDA finalized a rule to bring most laboratory developed tests under phased device requirements, which will increasingly affect lab‑run DTC genetic offerings (LDT final rule; FDA press announcement). FDA has also aligned its quality system with ISO 13485 through the QMSR amendments.
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, FDA emphasizes that genetics are only one piece of risk and that consumers should not change care based on DTC reports without confirmatory testing and clinician input (FDA).
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.”
-23andMe
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 generally do not order genetic tests; they review medical records and disclosures with your consent (ACLI). Disclosure obligations depend on jurisdiction and application language: in Canada, insurers cannot require or use genetic test results (GNDA); in the UK, predictive results are generally off‑limits, with a single exception for Huntington’s disease above £500,000 cover (UK Code); in Australia, adverse predictive results cannot be used at or below product‑specific sums insured under the FSC Moratorium; and in the U.S., more than a dozen states restrict use in some way (NCSL).
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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