Genetic Information Nondiscrimination Act (GINA)
by Sue Friedman
Genetics hold the promise for an era of unparalleled medical possibilities. Genetic testing, for example, can now identify people who carry hereditary mutations and who may be at high risk for diseases such as cancer. But for many people, genetic testing is a double-edged sword. While they may appreciate scientific advances that have created a blood test to determine whether they carry a BRCA mutation or not, many worry a positive test result may be used against them, jeopardizing their jobs or health insurance.
This fear of genetic discrimination may prevent people from talking to relatives or experts about their family history of disease; they may be afraid to undergo genetic testing or to notify health care professionals about their genetic status. Many refrain from participating in research studies, thereby slowing the development of potentially lifesaving treatments or riskmanagement options.
Although documented cases are rare, genetic discrimination is a common concern for those with a family history of disease. Most states have some laws relating to genetic discrimination, but the amount of protection they offer and how they define genetic information varies from one state to the next. The Health Insurance Portability and Accountability Act (HIPAA) protects people with group insurance from having their rates changed or their insurance dropped because of any preexisting condition. But HIPAA has many loopholes; it simply isn’t broad enough to protect everyone from genetic discrimination in health insurance.
In February, the Senate unanimously passed The Genetic Information Nondiscrimination Act (GINA) of 2005. The bill (S.306) proposes to prohibit discrimination in employment and health insurance based on an individual’s genetic information. President Bush subsequently issued a supportive Statement of Administrative Policy. The corresponding House bill (H.R. 1227), however, is still working its way through committee. Introduced in March by Congresswoman Judy Biggert (R-IL), this important legislation now has 126 co-sponsors. But there is still work to be done. Employment trade organizations, specifically the National Association of Manufacturers and the Chamber of Commerce, are actively opposing the bill.
FORCE is proud to be a member of the Coalition for Genetic Fairness (CGF), a partnership of advocates, industry members, and health professionals who are working hard to increase support for this legislation. Help us move this critically important legislation forward. Voice your opinion to your elected representatives. Call or visit their local office. Together, our actions in support of this bill could move it from political football to actual law.
Thanks to Becky Fisher for the use of this image
Why Do We Care?
Genetic medical advances are being discovered with increasing regularity, but our laws aren’t keeping pace. A common national framework must be provided; one that prohibits insurers and employers from requiring a person’s genetic information or denying coverage or jobs because of that information. For more information about genetic information and discrimination view the brochure written by FORCE and the National Society of Genetic Counselors. You may order the brochures by calling FORCE at 866-288-7475 or visiting the ordering publications section of our website.
The Problems with HIPAA
HIPAA prohibits group insurance companies from denying, canceling, or charging different rates for individuals with preexisting conditions, but it doesn’t adequately address genetic information:
- It does not protect people with individual insurance plans.
- It does not prevent insurance companies from requiring people to disclose whether they have had a genetic test, even if the companies are not allowed to use the information against them.
- It does not prevent an insurance company from denying coverage to or increasing rates of its entire group (even if the company cannot discriminate against an individual), based on the genetic test results of an insured person.
- It does not prevent employment discrimination based on a genetic test result.
- Find contact information for the House of Representatives.
- Learn more about the Coalition for Genetic Fairness.
- Find more details about advocacy and how to become involved to get this important legislation passed. Visit the FORCE website section on advocacy.
- Visit The National Human Genome Research Institute’s website and search the legal database to determine your state’s laws on this issue.
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