Liz Varga, Certified Genetic Counselor, Nationwide Children’s Hospital, Columbus OH writes….
Some people may have concerns about genetic testing for clotting disorders (thrombophilias) for fear of genetic discrimination. Fortunately in the United States, we have laws in place that can alleviate this concern.
- Health insurance: It is illegal for insurance companies to request, require, or use genetic information to make decisions about (a) eligibility for health insurance, and (b) health insurance premiums, contribution amounts, or terms of coverage.
- Employment: It is illegal for employers to use a person’s genetic information to (a) make decisions about hiring, firing, promotion, pay, privileges or terms, and (b) to limit, segregate, classify, or otherwise mistreat an employee.
- Life insurance: It is NOT illegal to charge higher premiums for life, long-term care, or disability insurance based on results of genetic testing.
THE INFORMATION IN DETAIL
The Genetic Information Nondiscrimination Act (GINA) went into effect in 2010 and provides protections from genetic discrimination in terms of health insurance and employment. GINA allows people to safely use genetic testing and/or counseling to learn about health risks without fear of genetic discrimination (http://www.ginahelp.org). The genetic information protected under GINA includes family health history, the results of genetic tests, the use of genetic counseling and other genetic services, as well as participation in genetic research.
a) GINA and Health Insurance
GINA makes it illegal for most health insurers to request, require, or use genetic information to make decisions about:
- Eligibility for health insurance
- Health insurance premiums, contribution amounts, or terms of coverage
Under GINA, it is against the law for most health insurers to use a genetic test result or family health history as reasons to deny you health insurance, or decide how much you need to pay for health insurance. In addition, GINA makes it against the law for most health insurers to:
- Consider family history or a genetic test result a pre-existing condition
- Ask or require that you have a genetic test
- Use any genetic information they do have to discriminate against you, even if they did not mean to collect it
Excluded Health Insurers: GINA applies to all employer sponsored health insurance plans (a group plan) as well as health insurance you purchase on your own (an individual plan) for you and your family. GINA also applies to Medicare supplemental policies for individuals who have insurance through Medicare. The health insurance protections of GINA do not apply to:
- Members of the US military who receive their care through the Tricare military health system
- The Indian Health Service
- Federal employees who get care through the Federal Employees Health Benefits Plans
These groups may have policies in place that provide protections similar to GINA, but you may want to inquire.
b) GINA and Employment
GINA makes it against the law for employers to use your genetic information in the following ways:
- To make decisions about hiring, firing, promotion, pay, privileges or terms
- To limit, segregate, classify, or otherwise mistreat an employee
This means it is against the law for your employer to use family health history and genetic test results in making decisions about your employment. It is also against the law for an employer to request, require, or purchase the genetic information of a potential or current employee, or his or her family members. There are a few exceptions to when an employer can legally have your genetic information. If an employer does have the genetic information of an employee, the employer must keep it confidential and in a separate medical file.
c) Specific questions
Question 1: I am considering having genetic testing for factor V Leiden. Can my health insurer deny me health insurance or raise my premiums if I have a positive result?
Answer 1: No. Under GINA, health insurers cannot use genetic information, including results of genetic tests, to make eligibility and coverage decisions. Genetic test results cannot be considered a pre-existing condition. Your health insurer cannot request, require, or use your genetic test results to make decisions about your eligibility for coverage or the amount you pay for health insurance.
Question 2: I found out that I have the prothrombin gene mutation (= factor II20210 mutation) 3 years ago. I was tested because my father had a DVT and was found to have this gene change. I never had problems with insurance previously. However, I had a pulmonary embolism (PE) last year, and now they want to raise my insurance premiums for my individual health insurance plan. Is this legal?
Answer 2: A person may have the genetic testing to learn about hereditary risk before developing symptoms of the condition. If they do, their insurer cannot use the information to make decisions about their eligibility, coverage, or premiums for health insurance. The genetic test result is protected by GINA. However, one limitation of GINA is that it does not stop health insurers from basing their decisions about eligibility, coverage, or premiums on current symptoms or diagnosis of a health condition (also known as “current health status” or “manifest disease”). This is true even if the condition may have been caused by or is related to a genetic predisposition. In the case above, the PE may have been related to the genetic predisposition; but the increase in premiums is related to the PE, not the gene mutation. The Patient Protection and Affordable Care Act, passed in March 2010, prevents insurers from dropping and individual’s coverage from the development of a new condition, and puts a cap on annual premiums.
Question 3: I am trying to get life insurance and the premiums that are being quoted seem high for someone like me who is young and healthy. I wonder if this is because I reported that I have factor V Leiden? Does GINA apply to life insurance?
Answer 3: At the time of this writing, August 7th, 2011, GINA’s protections do not apply to life, long-term care, or disability insurance. Therefore, it is legal to charge you higher premiums for any of these types of insurance if you report a genetic predisposition to disease. Not all insurance plans will adjust premiums based on a thrombophilia, since this typically does not affect a person’s life-span, and the increased risk of DVT/PE is usually moderate or mild. However, if this type of insurance discrimination is of concern to you, you may want to consider taking out policies prior to genetic testing.
You may also live in a state that has specific laws that apply to these types of coverage. You can check with your state insurance commissioner’s office for more information by going to:
- The National Conference of State Legislatures (NCSL) website: http://www.ncsl.org/
- The National Association of Insurance Commissioners website: http://www.naic.org/state_web_map.htm
d) Further Information
For more information about GINA, please see the website http://www.ginahelp.org (accessed 8/8/2011). This website is meant to provide consumers and provides more information about the protections under this law. The website was utilized in putting the content together for this article.
Last updated: August 10th, 2011
Disclosure: The author, Liz Varga, MS, CGC (Elizabeth.Varga@nationwidechildrens.org) has no financial conflict of interest relating to this post.