Post written by Dr. Serena Hung
Have you heard about GINA recently?
GINA is not a person. It is the acronym for Genetic Information Nondiscrimation Act that was signed into law in May 2008. It has created a lot of excitement in the medical community. In my practice, the most affected group would be the patients with a family history of Huntington’s disease. As you may or may not know, the son or daughter of a patient with Huntington’s disease has a 50 percent chance of inheriting the disease. Because of the high chance of getting Huntington’s disease, there is a chance of discrimination based on family history. Some people choose to get tested for the gene for Huntington’s disease and for those who test positive for the gene, even though they may not have any symptoms of the disease at the time, may also face discrimination.
Are you familiar with the American with Disabilities Act? GINA has certain similarities to it, especially in the proposed penalties for violations. GINA stipulates that no one should be discriminated against based on genetic information or family history. No one should be denied health insurance because of genetic information or family history, and may go as far as saying people with abnormal genes or a positive family history for genetic diseases should not be charged a higher health insurance premium. Also, employers will not be allowed to obtain information about family history. (It is each individual’s prerogative to disclose information to his or her employer, but he or she should not be required to do so.)
Note that this act does not cover other kinds of insurance such as life insurance, disability insurance or long-term care insurance. Insurance companies still have the right to deny coverage in those instances. However, to a lot of people, not having to fear that they will lose their health coverage is a major breakthrough. In fact, in one of the studies done by the Huntington Study Group, it was found that in the United States, people at risk for Huntington’s disease frequently ask that their genetic testing be done separately from their usual health institution for fear that this information will be accidentally disclosed. This is not the case at all in Canada where all Canadian citizens and legal residents have universal coverage and no one is ever denied health care. GINA offers some protection against the loss of health coverage. The people who fought for GINA really wanted the coverage to go farther, but at least this is a first step.
Where does this go from here? The section of the law relating to health coverage generally will take effect between May 22, 2009, and May 21, 2010. The sections relating to employment will take effect on November 21, 2009. Note that in many states, there are already provisions against genetic discrimination, but the levels of protection vary widely. All companies that are subject to GINA must, at a minimum, comply with all applicable GINA requirements, but may also need to comply with more protective state laws. Also note that GINA doesn’t cover companies with fewer than 15 employees.
For those of you who don’t have a family history of Huntington’s disease, there are other diseases that are covered by GINA. For example, people with a family history of breast cancer, familial polyposis, which carries a high risk of colon cancer, and mitochondrial diseases such as MELAS are all covered under GINA.
For more information, you can go to: http://www.genome.gov/24519851
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Looks like the co-founder of Google, Mr. Sergey Brin, is interested in Parkinson's disease funding research too !
- Gaurav Parikh