Meet GINA, the Genetic Information Nondiscrimination Act

BY DAVID HAMILTON

Amidst discussion over President Obama’s March executive order overturning the ban on stem cell research funding from federal tax dollars, impending action on another major biological issue has thus far gone relatively unnoticed.

Imagine that a close relative of yours was diagnosed with a debilitating genetic disease such as Huntington’s Disease. Imagine further that your employer found out about this, and fired you because your family history meant that you had a high chance of developing the disease yourself. This sort of genetic discrimination has happened to literally hundreds of people in the past few years, and often keeps people from getting disease screening that could lead to much-needed treatment.

Genetic testing has a number of useful medical applications, such as diagnosing or determining the chance of developing certain illnesses, and helping those at risk plan their health care options before symptoms appear. Newborns are generally tested shortly after birth for a few ailments, and some forms of cancer therapy analyze a person’s genetic makeup to determine how effective certain kinds of medicine will be.

The main problem is that a person’s medical records tend to include the results of genetic testing, and many insurance companies and employers have the right to examine those records. Since the test might indicate if a person is at risk for a severe chronic illness such as cancer or Huntington’s Disease, a life or health insurer might raise a person’s rates or deny, limit, or cancel their coverage in the case that they find out. Similarly, an employer might base hiring decisions on such data or even treatment of current employees by postponing a promotion, denying benefits, or even firing an employee if they believe that they might be prone to developing a degenerative disease.

However, starting this May, the Genetic Information Nondiscrimination Act (GINA), passed with near-unanimity in May 2007 after thirteen years of lobbying, will take effect, prohibiting health insurers from requiring a genetic test or asking for genetic information in most cases. GINA also prevents insurers from using genetic information as a preexisting condition, or in enrollment or coverage decisions. In November, GINA will affect the workplace, stopping employers from using genetic information in making decisions relating to hiring, advancement, providing benefits, training, or firing an employee. GINA also making it illegal to categorize employees based on genetic data or request genetic test results.

There are, however, limitations and problems foreseen with the bill. People insured or employed by the United States Military or who are already experiencing symptoms of a genetic disease are not protected by GINA, although those with relatives being treated for disease may not be legally discriminated against. Life and disability insurance providers are not affected by the bill, and there are some circumstances where an employer or insurer may be able to get a hold of genetic information. Although GINA prohibts employers from making decisions based on such data by GINA, chances are that some might be able to cheat the system and terminate a client or employee based on genetic data, but ostensibly for some other reason. Supporters contend that GINA is supposed to set a minimum standard of protection that individual states or future bills can build upon.

Others, such as Micheal Eastman of the Chamber of Commerce, think the bill does too much. A common argument is that GINA might lead to the filing of frivolous lawsuits. The concern is that insurers and employers might face lawsuits by employees who falsely claim that they were denied coverage or employment based on their genetic data, when in fact other reasons were the case. However, a company should be able to prove their innocence in such cases, and according to the Genetic Alliance president Sharon Terry, those filing a lawsuit based on GINA are first required to exhaust all administrative channels.

Another worry is that health insurers will be less able to intelligently set fees by gauging patient risk of developing a disease. This could lead to increased health premiums. However, the impact of GINA on fees would vary based on the proportion of the population tests that positive for known markers of diseases. One can also argue that health insurance has not encountered problems doing business without genetic information in the past, so the effect of GINA should not be catastrophic.

Although the legislation is not without problems, it possesses civil rights significance in that it prevents individuals from facing discrimination based on inherent factors over which individuals have no control. Former President George W. Bush underscored the victory which GINA represents for all individuals: "To deny employment or insurance to a healthy person based only on a predisposition [toward disease] violates our country’s belief in equal treatment and individual merit."

Solid protections appear to be in place for those showing genetic warning signs, and people are now more likely to be able to get more effective medical treatment by being able to test for potential health problems without fear—or at least, with less to fear.

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