Genetic Information Nondiscrimination Act
Evidence suggests that many people at risk for hereditary illness avoid genetic testing because they worry that health insurance companies will deny them benefits based on their genetic information. Although actual cases of genetic discrimination are rarely documented, many people who may benefit from genetic testing avoid it because they fear they will no longer be able to obtain health insurance. Fear of genetic discrimination is also a barrier to our society’s ability to fully benefit from the advances that genomic medicine has and will have to offer.
Thanks to a new federal law, the Genetic Information Nondiscrimination Act (GINA), people at risk for hereditary illness have less to worry about. GINA protects people at risk for hereditary disorders from being discriminated against by their health insurer and employer. GINA makes it unlawful for health insurers to deny coverage or charge a higher premium to a healthy individual who has a potential genetic condition or genetic predisposition towards a disease or disorder. GINA also makes it illegal for employers to make hiring, firing, placement or promotion decisions using an employee’s genetic information. GINA will take effect next year.
In working with people at risk for hereditary cancer syndromes, I frequently encounter questions and/or incorrect assumptions about the potential for insurance discrimination. Here are a few examples:
Is it harder to get health insurance with a positive genetic test?
Answer: The goal of GINA is to prohibit health insurers from making access to insurance more difficult for people at risk for hereditary illness.
Although fear of genetic discrimination is widespread, actual cases of discrimination are rare. There is no evidence of widespread, systematic discrimination by health insurers based on genetic test results. In addition to GINA, HIPAA states that “in the absence of disease, genetic information cannot be considered a pre-existing condition.” Also, in Oregon it is illegal to use genetic information about a person or a blood relative to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of or otherwise affect any policy for hospital or medical expenses.
It is important to remember that although GINA prohibits discrimination based on genetic information, health insurers (especially in the individual policy market) are still free to discriminate based on past health history. For most people seeking health insurance, their past history of illness, such as cancer; along with things like their age and pattern of health care usage are used by health insurers when deciding who will offered health insurance.
Will my health insurer pay for the genetic test?
Answer: Usually if a person meets established criteria for a genetic test for hereditary cancer, it is covered, although not always at 100%.
Will my health insurer be notified of my genetic test result?
Answer: Not without your authorization. However, if you take action based on your genetic test results, such as breast cancer screening with MRI, your insurer may require justification to cover interventions that you need based on your test result.
Will my genetic test results make it difficult for my children or siblings to get insurance?
Answer: Your test result will not be shared with your relatives’ health care providers unless you authorize it. GINA, HIPAA and Oregon law (if applicable) protect your relatives from genetic discrimination as well.
Conclusion:
The fear of genetic discrimination has been determined to be a potential barrier to our society’s ability to benefit from new discoveries in genomic medicine and its promise of personalized health care. The goals of genetic testing for hereditary cancer predisposition are to maximize early detection possibilities and ultimately prevent cancer. It is hoped that GINA will help make the promise of genomic health care a reality.
To learn more, Nancy.Ledbetter@providence.org.