New Federal Rules Protect Genetic Information from Misuse by Health Insurers

The federal government issued new rules on October 1 protect individuals against having genetic information used unfairly to raise health insurance rates, deny health insurance, or limit coverage because of pre-existing conditions.

As part of the implementation of the Genetic Information Non-Discrimination Act (GINA), the Departments of Health and Human Services, Labor, and Treasury published the new regulations in the Federal Register, providing for a comment period before they become final.

In addition, the Office for Civil Rights in the Department of Health and Human Services proposed changes to the Health Insurance Portability and Accountability Act (HIPAA) to clarify that genetic information is health information.  As such, insurance companies cannot use or disclose genetic information to compute premiums, deny coverage, or deny benefits because of pre-existing conditions.  Penalties for violating the HIPAA Privacy Rules range from $100 to $50,000 for each violation.

Further,under GINA, neither group nor individual health plans can request, require, or buy genetic information for underwriting purposes.  Plans are also forbidden to require genetic testing from individuals or their family members.

Commenting on the new rules, HHS Secretary Kathleen Sebelius said,

Echoing the late Senator Ted Kennedy, our efforts to protect Americans undergoing genetic testing from having the results of that testing used against them by their insurance companies is one of the ‘first major new civil rights’ of the new century. Consumer confidence in genetic testing can now grow and help researchers get a better handle on the genetic basis of diseases. Genetic testing will encourage the early diagnosis and treatment of certain diseases while allowing scientists to develop new medicines, treatments, and therapies.

Labor Secretary, Hilda L. Solis added,

Today’s genetic technologies yield data that are vital to helping Americans make personal, medical decisions. It is essential that we protect such information and ensure it is not misused by health plans or insurers. The rules issued today protect individuals against the unwarranted use of information related to their personal health because no one should have to fear that disclosure of their medical data will put their job or health coverage at risk.

What This Means for Patients and Their Families

C3 worked with the Genetic Alliance to get GINA passed, and we are happy to see the rules put in place to enforce it.

This should give reluctant family members of familial adenomatous polyposis (FAP), Lynch syndrome, and other inherited colorectal cancer patients confidence to get genetic testing.  If they have inherited a mutation, they can take steps to protect themselves.

There should be no need for being tested anonymously or paying for genetic testing privately for fear of health insurance discrimination.

However, while GINA protects against discrimination in employment and health insurance based on genetic information or family medical history, its protection does not extend to life, disability, or long-term care insurance.

It also only covers people who have not already had a disease.  So colorectal cancer patients and survivors are not protected from health insurance discrimination by GINA.  Insurers can deny individual coverage or charge higher premiums to people who have had colorectal cancer.  Employment discrimination is covered by the Americans with Disability Act (ADA) for cancer survivors.


  1. Amber says

    GINA is the best news I’ve heard in a long time. As someone in my early thirties who tested positive for a mutation associated with Lynch Syndrome/HNPCC I’m so glad to see that this is the direction we are moving.

    My father had colon cancer for the first time when he was just 23 years old. Against all odds, as the doctors only gave him 6 months to live, he survied. However, at age 38, he was diagnosed with colon, stomach cancer and pancreatic cancer. He died at age 39. His brother had died the year before at age 43 from related cancers and their mother, in her early 50’s.

    I now have a son who is 15 years old. If one has a parent with Lynch Syndrome, guidelines call for screening against colon cancer and related cancers start at age 20 or 10 years earlier than the earliest known onset in the family- whichever comes first, unless, of course, they undergo genetic testing and test negative. My father, having had colon cancer at age 23, meant that my son should’ve started with annual colonoscopies at age 13 or go through genetic testing and avoid the annual screening that may be unecessary at his age if he were to test negative (he has a 50% chance either way with me having been confirmed positive). If we opt not to have genetic testing, he could be going through annual colonoscopies every year unecessarily.

    I’ve struggled and put off this very emotional decission for 2 years past the point I should- in part, due to my fear of a lifetime of insurance discrimination for my son. I did pay out of pocket for my genetic test for the fear of insurance discrimination and my fear for him is even greater since he has not even yet entered adulthood and began with his own insurance, etc. I do still struggle due to the fact that private life insurance is still an issue- but we are moving in the right direction in this country with the view on this! Maybe insurance companies of all sort will start to look at this logically. After all, the purpose of being tested is to take pro-active measures to PREVENT these cancers and in turn, be healthier and less of a risk for them. So, in turn, I can argue that I am less at risk of a full blown illness than someone who had a father with the same situation as mine that has not gone through the genetic testing (and in turn, not committed to annual screening). However, they have not had the same risk of discrimination to this point (still do not with regards to life insurance policies, etc.).

    We will not win this war on colon cancer until any and all efforts are made to support people in any and all steps that are taken to reduce risk. Genetic testing and approriate screening for mutation carriers is one powerful tool to enabling people to be able to reduce their risk of cancer. I understand my higher risk to colon cancer and related cancers vs. the average population. However, I also understand my passionate efforts to be doing ALL I CAN to prevent them with colonoscopies every year and other screenings for the other cancers I am at higher risk for.

    Now, I need to gear up for the emotional decission to get my son tested- many other issues come into play with regards to decisions about letting him know, etc. However, one less burden has been removed. For that, I am grateful. For that, I thank you C3! Please keep us posted with the efforts. This is fabulous news and I would love to learn more ways that I can DO SOMETHING to help with this cause I am so very touched by, and so very passionate about. This can change someone’s mind to go and find knowledge that may save their life. I believe genetic testing is a very personal decision and what is right for one, may not be for another. However, one thing that should not impact that decission is fear of not being able to have health coverage! Thank you, thank you, thank you.

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