To test or not to test: Lynch syndrome edition

February 9, 2022 8:18 PM

I met with a genetic counselor a few years ago about my mom's colon cancer, but it turns out my dad's side has the real nasty treasures, in the form of a few specific kinds of cancer that have killed relatives and are often related to Lynch syndrome. I have a few financial questions for y'all, my smarter friends. (I am in the U.S.)

She advised me that if I were to get tested for Lynch, it would be smart to have plans in place for life insurance and long-term care insurance, as they'd be much more expensive if it turned out I do carry the gene. Is that right?

She also said that a possible positive result could affect my sibling's and cousins' various insurances, too, given that no one in the family thus far has ever been tested. Is that a thing?

I currently have health insurance through my spouse's employer and talked all this through on the emotional side with a therapist back when I met with the genetic counselor. I don't feel particularly anxious about it, but I'm getting to an age where I should probably be getting more frequent exams and things.

Is there a way to handle this situation such that if it turns out I do have the mutation, it won't bust open the financial life of that half of the family tree? Ahhh, American health care...

Thank you a zillion for any advice you've got.

posted by anonymous to Work & Money (3 answers total)

GINA prohibits health insurers from discrimination based on the genetic information of enrollees. Specifically, health insurers may not use genetic information to determine if someone is eligible for insurance or to make coverage, underwriting or premium-setting decisions. Furthermore, health insurers may not request or require individuals or their family members to undergo genetic testing or to provide genetic information. As defined in the law, genetic information includes family medical history, manifest disease in family members, and information regarding individuals' and family members' genetic tests. The health insurance protections of GINA extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration. For the U.S. Military’s TRICARE insurance program, GINA offers more limited protection. TRICARE may not use genetic information for coverage, underwriting, or premium-setting, but eligibility for TRICARE insurance is contingent upon employment by the U.S. Military, and GINA’s employment protections do not apply to the U.S. Military. The U.S. military is permitted to use genetic and medical information to make employment decisions (see next section on “Employment (Title II)” for more information).

GINA’s health insurance protections do not cover long-term care insurance, life insurance, or disability insurance, though some states have state laws that offer additional protections against genetic discrimination in these lines of insurance. Visit the Genome Statute and Legislation Database to search for relevant state laws. (emph. added)
posted by They sucked his brains out! at 9:06 PM on February 9, 2022 [5 favorites]

I have Lynch. I have heard about securing life insurance prior to testing. I don’t know if that’s absolutely the case or not, but better safe than sorry. My daughter recently got tested and made sure to have life insurance in place prior to testing. They did not discriminate against her life insurance rates because I have Lynch. So I don’t think that would affect your cousins and whatnot. I could be wrong though - could you review that with your genetic counselor? It had never occurred to me that my Lynch diagnosis would affect my cousins, siblings, children’s insurances. That really sounds bonkers to me. I think it’s commendable that you’re worried about your family’s insurance and financial welfare. But please do not put off getting tested for Lynch and the subsequent screenings necessary to keep you healthy.
posted by Sassyfras at 9:46 PM on February 9, 2022 [2 favorites]

Note that GINA protects against discrimination in health insurance and employment only. It does not protect you against discrimination by life insurance companies. So the advice to potentially purchase life insurance before undergoing testing may be a good one.

Alternately, some genetic testing companies offer anonymous testing, where you get the results back privately and they do not retain any information about who you are. Of course, a life insurance company can still ask you if you have any known genetic risks, and could theoretically cancel your policy later if they were able to demonstrate that you knew about and didn't disclose a condition during the application process. But this, of course, would require them to know that you got the test.

I will leave the moral calculus of such a course of action as an exercise for the reader, except to say that personally, I have always felt that it is not a sin to lie in response to a question that someone has no right asking, but is compelling you to answer anyway.
posted by Kadin2048 at 9:38 AM on February 11, 2022