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Genetics blog

With Mayo Clinic genetic counselor Carrie A. Zabel, M.S., C.G.C.
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November 1, 2008
Genetic discrimination: Something to be frightened of?
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By Carrie A. Zabel, M.S., C.G.C.

There are many things that might frighten you about genetics — the complexity of it, your psychological reaction to a genetic diagnosis, how to explain a result to your family members, and most often reported, the possibility of genetic discrimination.

Genetic discrimination refers to the possibility of an insurance company gaining access to your medical records or results of genetic testing and using this information to determine coverage or set premiums. To my knowledge, there has never actually been a case of genetic discrimination that has gone to trial, yet people continue to cite the possibility as a major reason they chose not to pursue genetic testing.

To help limit these concerns, the U.S. government signed the Genetic Information Non-Discrimination Act (GINA) into law in May 2008. This law:

  • Prohibits both group and individual health insurers from using a person's genetic information in determining eligibility or premiums
  • Prohibits an insurer from requesting or requiring that a person undergo a genetic test
  • Prohibits employers from using a person's genetic information in making employment decisions
  • Prohibits employers from requesting, requiring or purchasing genetic information about a person or their family members.

Unfortunately, GINA has some limitations. They include:

  • It doesn't prohibit medical underwriting based upon an individual's current health status.
  • It doesn't cover life, disability or long-term care insurance.
  • It doesn't apply to members of the military.

The health insurance provisions of GINA will take effect in May 2009, while the employment provisions will take effect six months later in November 2009. I want to hear your thoughts on this subject: Have you had an experience where you felt discriminated against based on your genetic information? Do you think GINA provides enough security for patients? How do you think insurers will handle the rapid integration of genetics in medicine — will this become more or less of a concern? Let's talk!

5 comments posted
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December 11, 2008 1:04 p.m.
I had colon cancer because of the MLH1 gene. It has been two years; but I will never leave this job because I am included in the group health insurance---not until I reach Medicare age. I was advised by the genetic counselor at the hospital to have my children tested---but not under their names, only their real birthdates because of possible insurance prejudice. We did so. I don't trust insurance companies to not 'redline', create extensive waiting periods, demand excessive premiums, etc. PS. I am a medical biller.
- kc
November 15, 2008 3:36 p.m.
I had breast cancer, retired from my job, but I cannot now go back! I cannot get insurance. My husband can't get insurance cuz'he has high blood pressure. Sorry, we can get the insurance, but the price is so high we could not live otherwise! Thanks for letting me tell others.
- shirley chase
November 6, 2008 7:44 p.m.
Having the genetic profile of someone who should have a serious, if not terminal, illness, but having no symptoms myself, I am hesitant to say that genetics in medicine are at a stage in which they should be considered best practice. I have very few and very managable symptoms of cystic fibrosis, but when I saw the cystic fibrosis consultant, I walked away with a book. "Accepting your terminal diagnosis as an adult," or some such nonsense. I think that assumptions are made based on genetic profiles that we don't know enough to make. I want to have children, but am afraid that I will be unable to have help (infertility being my only symptom) because some specialist doesn't think my genetic profile should be passed on. It irks me.
- Jim
November 5, 2008 12:15 p.m.
I have very high blood pressure which I cannot contol because of family history of not being able to tolerate medications. Mayo Clinic discovered this problem and my primary doctor understands. The problem comes from the rest of the medical community who refuse to believe me and consider me a trouble maker. At age 86 I do my best to exercise and eat as prescribed by Mayo's (for Gerd) but sometimes the frustration becomes overwhelming and leads to Anxiety Attacks, which thankfully can be controlled with a very small amount of Lorazepam as occasionally needed. My question is, aren't doctors taught about genetics, or do they just choose to ignore the differences in people and push pills? When I have to go to the hospital ER,they just give me the usual high blood pressure tests, tell me to get my blood pressure down and leave me sitting 4 to 6 hours. The discrimination is so obvious! If they don't know, shouldn't they be honest and say they just don't have any answers? That would save them time and much frustration for me, plus the huge expense to Medicare.
- Louise
November 5, 2008 12:09 a.m.
I have and still am discriminated against physicians and society because I was born with a mental disorder called Bi-polar. Although I have not experienced an episode in nineteen years until this year due to a chemical change. I have an existing Workmens Comp case and their doctors are excused from the Hippa Law and once they find out what medications I'm on they start treating me like I'm worthless. I was referred to a Pulmonary doctor per my GP and as soon as he saw the meds I was on I lost his respect before I had a chance to gain it. He is a doctor without compassion as it is so, my Psychiatrist up North wanted to speak to him and he ditched him until the day of my second appointment but I live in Tallahassee and the Health system leaves a lot to be desired. People in general know I'm different so they often focus on the curse part and leave little recognition for the gift part of the illness. I am presently being reviewed by the board at Mayo Clinic and so far I've been told that there are twelve differnt specialists that they've come to conclude that I shoud see there. I believe most of my ailments are work related and the episodes were triggered by a chemistry change and an unethical supervisor that's a control freak and represents mis conduct all over the board. Anyway, I just wanted to respond because I didn't see any cooments listed for your topic of conversation an it's important that society be made to respect genetic disorders and not condone them. Thanks
- Valerie
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