Debated in Congress for over 13 years, the Genetic Information Nondiscrimination Act (GINA) was finally signed into law on May 21, 2008.
What does this mean to breast cancer patients, those at risk, and their families? Quite a bit, actually. If you have tested positive for the BRCA gene mutation, or believe that you have a genetic risk factor for breast cancer but have been afraid to be tested, this law should allay some of your fears.
Specifically, the Act will have the following impact:
Health insurance providers may not:
- Restrict enrollment based on genetic information
- Adjust premiums based on genetic information
- Be given genetic information prior to enrollment
GINA applies to all health insurance programs, whether private or administered by a state or federal agency.
Employers may not:
- Make hiring decisions based on genetic information
- Make compensation decisions based on genetic information
- Share genetic information in their possession
GINA applies to employers, employment agencies, labor organizations and training programs.
It is expected that the health insurance provisions will be in full force and effect within 12 months and the employment provisions within 18 months.
Many states already have legislation in place that protects individuals from discrimination based on genetic information. GINA, however, provides a uniform guideline to rely on when making decisions about genetic screening. National agencies that help people make these decisions will also have an easier time working with one universal doctrine, rather than having to stay current with the laws of each state.
Discrimination is the main reason people choose not to undergo genetic testing; thus, the benefits of this Act are enormous. With breast cancer alone, it is estimated that a patient who tests positive for the BRCA mutation and chooses prophylactic surgery reduces her risk of dying by up to 90% – a very compelling statistic. Health professionals across the nation are hopeful that this law will encourage people to seriously consider genetic testing if they are at risk for certain diseases. They hope to see a shift toward disease prevention, by way of appropriate genetic testing.
Yet, genetic testing is a very personal decision, and it is not right for everyone. Test results *obviously* can have life-altering consequences. It is a decision you will want to make with the support of your health professional and a counselor specifically trained in genetic counseling.
The Coalition for Genetic Fairness and FORCE were instrumental in seeing that this bill was passed. For more information on genetic testing in general, as well as regarding breast cancer in particular, please see their links below.