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Article: Insurance companies are more than curious about your genetic test results

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What are doomsday genes? Questions for your doctor
What does this mean for me?                        Resources                                    

Knowing that you have a genetically high-risk for a health issue can help you make informed choices to manage your health, reduce your risk for disease, and prepare for the future. Many people fear losing their insurance benefits if they test positive for a mutation that raises their risk for disease. Federal laws protect against most, but not all forms of insurance discrimination. It’s important for people to understand and weigh the benefits and risks of genetic testing prior to testing.

What are “doomsday genes” and why are insurance companies interested in them?

The article labels genes that predispose people to serious or life-threatening health concerns as “doomsday genes.” “Doomsday” is a frightening term that implies a terrible ending. A recent article on asked, “Do you have ‘doomsday genes’?”, referring to a genetic test result that shows you have an inherited predisposition to cancer or other serious diseases. The article’s title misuses the term, which scientists typically use to describe genetic technology that can potentially destroy an entire species, such as a certain virus or mosquitos, for example. The use of “doomsday genes” in this article sparked significant backlash from patients and health care providers.

Despite the article’s title, the text isn’t so much about “doomsday genes” as it is about the possibility of insurance discrimination by some insurance companies—primarily those that offer long-term care insurance. The article states, “It [genetic testing] gives the policyholder an advantage the insurer doesn't have: an indication of what the future holds. Insurance companies—particularly those that offer long-term care (LTC)—take a risk offering these policies. Insurers know the percentage of the general population that will become ill or die at a particular time in life, but they don't know who exactly.”

Providing LTC insurance is big business, with concerns of providing service and controlling costs, and according to the article, insurers within the industry are in financial crisis. Faced with numerous factors that are rapidly driving up the cost of LTC—each day 10,000 Americans turn 65, and more than two-thirds will need long-term care at some point—many LTC insurers are now bankrupt or no longer provide that service. Even big companies, including Prudential and MetLife, have drastically scaled back their LTC offerings.

Some insurance industry experts are concerned that the explosive growth of genetic testing may tip the traditional balance of low-risk/high-risk insured individuals as more people who learn that they have a genetic mutation want to secure future long-term care. So, it's not surprising that insurers would like to know as much as possible about the genetic makeup of their policyholders and individuals who have, according to a recent story in Leader's Edge, a magazine for insurance agents and brokers, "… an opportunity to game the system and apply for LTC insurance without the insurer knowing the true nature of the risk." 

What does this mean for me?

Genetic testing can save lives by predicting the potential for disease. If your test result has implications for medical screening, treatment, etc., it is important to have the information included in your medical record so that your health care providers can use it to help you. 

Genetic counselor, Jana Pruski-Clark, Senior Vice President of Clinical Services at Informed  and FORCE Scientific Advisory Board member said, “Learning about one’s inherited tendencies and health risks through genetic tests provides the opportunity to intervene to prevent disease and optimize one’s health. Genetic test results provide accurate information about your health risks, even for health conditions that have more limited prevention and management options. Understanding these risks can help you to make informed decisions about your health choices and lifestyle behaviors that can decrease or increase your level of risk.”

The good news is that The Genetic Information Nondiscrimination Act () protects the privacy of consumers’ health information and forbids the use of genetic test results for health insurance coverage decisions. For people already diagnosed with disease, the Affordable Care Act offers additional protection against insurance discrimination. The not-so-good news is that these protections do not extend to life insurance, disability insurance or LTC insurance. However, some state laws offer a broader scope of protection, including privacy of all medical information. According to the National Human Genome Research Institute, 17 states now have additional laws restricting the use of genetic information in determining coverage for life insurance, 17 states for disability insurance, and 8 states for long-term care insurance.  

Lisa Schlager, FORCE’s Vice President, Community Affairs believes that federal genetic information laws should also cover LTC and life insurance. Speaking with CBS New York, she said, “It’s a big challenge because the insurance industry wants to maintain its independence and its ability to determine risk based on their own formula and not a dictated law.” Schlager does not advocate withholding or hiding the results of the tests when applying for a life insurance policy, because you could later be accused of providing fraudulent information.  She and others suggest applying for LTC and life insurance before having any genetic testing done. 

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Posted 3/13/18


“Do you have ‘doomsday genes’?” CBS News: Moneywatch. Ed Leefeldt, February 28, 2018.   

“Genetic Testing Results Could Prevent Users From Getting Insurance.” CBS News, New York. Dana Tyler, February 7, 2018.


FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.

This article is relevant for:

People considering testing for an inherited gene mutation

This article is also relevant for:


people with a genetic mutation linked to cancer risk

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Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • Will my insurance company have access to my genetic test results?
  • Can you refer me to a genetics expert?
  • Does our state have additional laws against genetic discrimination?
  • I'm considering genetic testing, should I consider purchasing life, disability or long-term care insurance?
  • I'm considering genetic testing, should my children or other relatives consider purchasing life, disability or long-term care insurance?
  • Can you refer me to a genetic counselor?

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