The Scientific Activist

Last Thursday (April 24), the Senate unanimously passed the Genetic Information Nondiscrimination Act of 2008 (GINA, H.R. 493) in a landmark vote. The goal of this bill is “to prohibit discrimination on the basis of genetic information with respect to health insurance and employment,” and it therefore would help fill this gaping hole that exists in our current protection of employees’ and patients’ rights.

The bill was passed by the House roughly one year ago by a vote of 420-3, and although it was scheduled for debate in the Senate, it wasn’t voted upon until last week. Now, the Senate has approved the bill 95-0, with five senators abstaining. Disconcertingly, three of these five are the three remaining presidential candidates–Barack Obama, Hillary Clinton, and John McCain. Fortunately, all three have expressed support for such measures in the past, and Obama and Clinton were even co-sponsors of S. 358–the bill that was scheduled for debate but never voted upon in 2007. Obama also released a statement applauding the bill’s passage. I’m going to assume, then, that these three senators were just busy campaigning that day, although I’m still disappointed. This is, of course, not as bad as what happened in the House, where three Congressmen voted against the measure. All were Republicans, and one of them was crazy ol’ Ron Paul. Go figure.

A genetic nondiscrimination bill was first proposed by Congresswoman Louise Slaughter (D-NY). At that time, this wasn’t really an issue at the forefront of national consciousness, and Republican lawmakers managed to stifle its progress for 13 years. Since then, genetic testing technology has advanced tremendously as have voter fears of the misuse by employers or health insurers of such test results. The final roadblock to the passage of the bill was Senator Tom Coburn (R-OK), who “was concerned about some provisions opposed by insurers and the U.S. Chamber of Commerce,” according to the Washington Post. Now that the bill has passed both the House and the Senate, and differences between the two versions need to be reconciled, and then the bill will be passed along for President Bush to sign it into law–something he has indicated he will do.

Genetic testing is only in its infancy as a component of basic medical care, but its role should increase exponentially. It has the potential to identify (and allow treatment of) health problems before they cause symptoms and to usher in a new era of more targeted medical practice. (In fact, it is primarily the development of treatments needed to compliment such testing that have lagged behind). The abuse of such test results would be easily prone to abuse, however, and public fears of GATTACA-like scenarios are only increasing as the general public becomes more aware of these technologies. It’s important that the public is protected from these abuses, and it’s equally important that the public knows it is protected. Otherwise, people could end up widely opting out of testing that would otherwise have the potential to significantly improve health and medical care. Such fears also cause lower enrollment in genetic research studies–in some cases causing up to a third of potential participants to opt out, according to Francis Collins, director of the Human Genome Project. Collins has been a vocal supporter of such a genetic nondiscrimination act for quite awhile, and he should certainly feel somewhat vindicated by the recent passage:

“This is a day for celebration,” said Francis S. Collins, director of the National Human Genome Research Institute and one of the leaders of the Human Genome Project, which in 2003 launched the age of molecular medicine and genetic testing. “I think the American public can breathe a sigh of relief that the fear of genetic discrimination, which has basically been a cloud over our future, has been dealt with.”

Protections will always need to be in place to prevent employers from discriminating against potential employees whose genetic tests may indicate a higher risk of developing some undesirable condition down the line. The protections against discrimination by health insurers are certainly necessary now in our current climate, but this is just another unfortunate consequence of the US’s market-driven health care system. Under a more modern universal health care program, such protections would be completely irrelevant, as nobody could arbitrarily be declined care. The fact that we know we need these protections is just a sad result of the health insurance industry’s history of declining care to customers whose health conditions make them no longer profitable.

This is declining of coverage is no less savage than declining someone employment due to some unfavorable genetic test result. The Genetic Information Nondiscrimination Act is a great step forward and is certainly necessary. In the long run, however, we need to work to create a system in which the idea of health insurers declining coverage is irrelevant.

Comments

  1. #1 Jim51
    April 29, 2008

    Did the 5 senators “abstain” or were they just absent?
    Generally the two things are different. If one abstains it usually means they were present but refused to vote either yay or nay.
    Jim51

  2. #2 Nick Anthis
    April 29, 2008

    All three are listed as “absent”, so I believe that they were physically not there.

  3. #3 Chris
    April 29, 2008

    During campaign season, the candidates typically only come back to Washington for contentious votes. If the bill’s fate is already decided, as in this case, it would be a waste of time (and fuel) for them to catch a flight back to rubber-stamp it.

  4. #4 arthritistreatmentguy
    April 30, 2008

    with this in mind. i was thinking of the science fiction movie Gathaca where your job is dependent on your dna sequence.

  5. #5 Todd O
    May 2, 2008

    While everyone—including opponents—endorses the goals of the legislation, there is a difference of opinion about how to achieve them without opening the door to unintended consequences.

    So “crazy ol’ Ron Paul” has a point.

    The most outspoken opponents of the bills are mainly Washington-based trade and professional organizations that include the U.S. Chamber of Commerce, the National Association of Manufacturers, the National Retail Federation, the Society for Human Resource Management and others.

    As members of a coalition—the Genetic Information NonDiscrimination in Employment Coalition, or GINE—opponents say the proposed legislation is “overly broad.” They are concerned that the federal bills, which do nothing to address inconsistent state laws, would result in increased amounts of frivolous litigation—and potentially, punitive damages—as a result of confusing record-keeping and technical requirements. In addition, opponents fear it would require employers to offer health plans covering all treatments for genetic-related conditions.

  6. #6 ecoli
    May 3, 2008

    And how long do you think it would take to get congress to pass a bill that lets them use the DNA library for “terrorists only”

    Don’t forget, social security wasn’t supposed to be used for identification either.

  7. #7 Frank
    May 4, 2008

    Can anyone confirm (or deny) that GINA does not prohibit discrimination on the basis of genetic information with respect to life insurance?

    It appears to me that if genetic testing shows, for example, that a person has a predisposition toward some type of cancer, there is nothing in GINA to prohibit life insurance companies from either refusing to issue a policy or charging higher premiums for a policy.

  8. #8 Nick Anthis
    May 5, 2008

    I see nothing in the text of the bill about life insurance, at least.

  9. #9 Organic Chemistry
    May 12, 2008

    I think the fact that the senate (which can agree on very little) has overwhelmingly passed this really says something.

  10. #10 drpatrick
    May 21, 2008

    These regulations are a good idea, but there still seems to be some holes in the new laws. For instance, health information is not the only thing you can get from your DNA:

    http://dnatestingguides.com/2008/05/what-is-dna-testing/

    For example with the wholesale collection of DNA the government, or any company that so wished, could compile a DNA fingerprint database or trace your ancestry.
    It’s not clear how the new regulations would apply to this. Perhaps the best way to stop companies/governments abusing genetic information, is to not only protect the information, but not let them have it in the first place.

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