The Genetic Information Nondiscrimination Act (GINA)

October 25, 2008

images4.jpgCommentary by Bani Chander MD, PGY-3.  Reviewed by Antonella Surbone MD PhD FACP, Ethics Section Editor.

On May 21, 2008, president George W. Bush signed the Genetic Information Nondiscrimination Act (GINA) into effect. After 13 years of debate in Congress, the bill finally passed through both the senate and the house nearly unanimously. So what is GINA? This piece of legislation prohibits insurance companies from taking into account genetic conditions or family history when determining risk assessment. In addition, GINA makes it illegal for employers to make employment and promotional decisions based on genetic information, with fines up to $300,000 per violation. In effect, this means that people with increased risk for genetic diseases will no longer lose their jobs, pay higher insurance premiums, or be denied coverage all based on the premise that these individuals have no control over their genes. Ultimately, the increased cost to cover people with genetic diseases is spread over a larger insurance pool and the cost for “bad genes” is shared by those with low or unknown genetic risk. The health care regulations will go into effect 12 months after the bill’s passage and the employment regulations will begin at 18 months.

GINA has been welcomed as a legislation act that will greatly improve Americans’ access to the personal and research benefits of genetic testing. In the past, many people have foregone genetic testing that could potentially be life saving, out of concern that insurance companies may discover the results of these tests. These individuals then miss out on the chance to seek preventative care measures, monitoring, or have interventions that could cure or at least prolong life. GINA now makes it possible for these individuals to have genetic testing done without concern about negative repercussions. In turn, this may lead to decreased long term health care costs, if prevention or early interventions will prove to be cost-effective, and GINA may also encourage research to understand and develop new treatment modalities for genetic diseases.

While GINA does protect people with a higher risk of certain genetic diseases, it does not protect everyone. GINA does not provide protection to a person who already has a disease. An individual who has Barrett’s esophagus discovered on EGD or several adenomatous polyps on screening colonoscopy, for example, is not only not protected, but may suffer from higher rates of insurance than they would have pre-GINA, given the spreading of costs among persons with and without genetic risks.

It is certainly true that the Genetic Information Nondiscrimination Act protects people from having to pay more for simply having bad genes. Certain questions remain. If we are willing to prohibit insurance companies from taking into account genetic predisposition, should we also go one step further and protect those who already have an established disease? Ultimately, it remains to be seen whether GINA is a step in the right direction towards a more just health care system or will, unexpectedly, make health care unaffordable not only for the very sick, but also for the well.

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