Implications of the Genetic Discrimination Act (GINA)
The Genetic Information Discrimination Act (GINA) was passed in 2008 in order to protect individuals from being discriminated against in either employment or health insurance due to their genetic information. Title 1 of GINA states that insurance companies can't deny coverage to healthy individuals due to a predisposition to a genetic disease or the prevalence of a genetic disease in an individual's family history. The bill also prohibits insurance companies from charging higher premiums for individuals that have a genetic disorder. Title 2 of GINA forbids employers from discriminating on the basis of genetic information in all aspects of employment, which includes firing, hiring, pay, job assignments, promotions, layoffs, training, and fringe benefits.
Within GINA, genetic information is determined as the following: information about an individual's genetic tests or the tests of their family members, information about a genetic disorder that either an individual or their family member is inflicted with, reasons for inquiring about genetic services, or the genetic information about an individual's fetus, whether it was carried to term or not. GINA Title 1 and 2 works to ensure confidentiality of all genetic information.
The bill's co-sponsor, Senator Olympia Snowe, referred to GINA as “the first civil rights legislation of the 21st century.” She might have been right. As evident through the films Forgiving Dr. Mengele and Miss Ever's Boys, genetic information has historically been misused to meet disastrous ends. The documentary Forgiving Dr. Mengele recounts the story of Eva Mozes Kor, who was subjected to torturous experiments during the Holocaust, alongside her twin sister. Kor and her sister were among 1,400 other twin pairs who suffered from such experiments in the name of “science.”
This movie exhibits a clear example of when genetic information can be misguided and used to inflict harm, and not benefit society. This is one of many cases in which research participants, whether voluntary or forced, are abused. GINA seeks to mend this occurrence by protecting individual's genetic information, which will possibly encourage more people to voluntarily undergo genetic research.
Not to mention, GINA also seeks to ensure equality for genetic research, which is a realm that generally goes unnoticed, but has major implications. Genetic information, especially as it pertains to health, has historically not been considered a private ordeal. It was commonly believed that health insurance companies, who pay for individual's coverage, or employers, who supply benefits in the form of health insurance, had a right to know about people's genetic information. For insurance companies, it was believed they had a right individual's genetic information in order to not waste money on providing coverage for those who had a higher predisposition for certain ailments, thus, making insurance pricey. Employers, on the other hand, claimed a right to access genetic information because they were both supplying insurance, but also because they believed this sort of information spoke to an individual's ability to fulfill their duties.
GINA seeks to reject this notion, instead placing the civilians and employees rights first. However, it must be stated that the bill does have some flaws. To begin with, it does not ensure an individual's rights over the results and access to their genetic information. The bill also fails to protect genetic information from reaching a 3rd party and doesn't apply to the military, which can limit access to insurance for many individuals serving. The bill is still a great landmark for prohibiting genetic discrimination, which has commonly gone unnoticed, resulting in many abuses and misguided research.
Works Cited
"Genetic Discrimination." US EEOC Home Page. U.S. Equal Employment Opportunity Commission, 21 May 2008. Web.
"Genetic Information Nondiscrimination Act of 2008." National Human Genome Research Institute (NHGRI) - Homepage. National Institutes of Health, 16 Jan. 2011. Web.
Kleim, Brandon. "Genetic Discrimination By Insurers, Employers Becomes a Crime." Wired Science. N.p., 21 May 2008. Web.
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