Genetic Information Discrimination: It's Against The Law

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Information you carry around with you could be vital to your health and a strong predictor of possible medical conditions.

Thanks to the Genetic Information Nondiscrimination Act (GINA) of 2008, genetic information can be pursued openly without fear of discrimination by insurers or employers.

Thousands of people who may be at risk of genetic disease refuse testing that might help them make medical decisions, for fear of discrimination. Some don't use their insurance for the genetic test, hoping to keep the information secret. Others try to persuade their doctors to omit the test results from their health records, while others test under an alias and keep the results from their own doctors.

Could they be denied jobs or face higher insurance premiums if a genetic red flag shows up in their medical records? No! It's against the law.

GINA specifically prohibits issuers of health insurance from using genetic information to:
• establish eligibility, contribution amounts and premium fees
• specify the conditions of the policy
• impose a preexisting condition exclusion

GINA specifically prohibits employers from using genetic information to:
• fire or refuse to hire an employee
• discriminate with respect to compensation, promotions, or terms, conditions or privileges of employment
• treat employees differently

GINA also prohibits employers and health insurers from requesting, requiring, disclosing or purchasing employee genetic information.

While GINA is the most comprehensive law of its kind, it does not address current health status to determine coverage or premiums, nor does it address life insurance, disability insurance, or long-term-care insurance.

If you have a family history of certain diseases, especially cancer, you owe it to yourself and your family to pursue genetic information. Be informed so that you and those you love can make the best health choices.

For more information, go to:
• National Society of Genetic Counselors
“Find a Counselor” resource: www.nsgc.org
• National Human Genome Research Institute: www.nhgri.nih.gov/11510227
• National Association of Insurance Commissioners
www.naic.org/state_contacts/sid_websites.htm
• National Conference of State Legislatures
www.ncsl.org/programs/health/genetics/charts.htm
or call: (202) 624-5400 or (303) 364-7700
• Department of Health and Human Services
www.hhs.gov/ocr/hipaa
• Equal Employment Opportunity Commission
www.eeoc.gov

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Annette Leal Mattern HERWriter View Profile Send Message

We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.