May 6, 2008

Senate Passes Genetic Information Nondiscrimination Act

This last week has seen a small victory in healthcare coverage for consumers. The Senate, on a 95-0 vote, passed the Genetic Information Nondiscrimination Act of 2008 (GINA, H.R. 493). The bill's goal is to "prohibit discrimination on the basis of genetic information with respect to health insurance and employment," filling what was considered a large gap in coverage protection of employees' and patients' rights.

This vote has been a long time in the making, with multiple votes coming up on it, but never in the same congressional session. This year, Senate Majority Leader Harry M. Reid (D-Nev) determined that the bill needed to be on the front burner and its about time. Francis S. Collins, director of the National Human Genome Research Institute and leader of the Human Genome Project said, "this is a day for celebration...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." (Washington Post, April 24)

This doesn't seem like a big deal now but a big reason of that is due to the doubt citizens had about their coverage if genetic tests were performed. A January survey conducted by the Genetics and Public Policy Center found that 93 percent of respondents would not participate in genetic research projects unless it were illegal for employers and insurers to use the results against them.

And for those of us like myself who work with DNA research and clinical samples, a long standing problem has been solved. During my research many times it is necessary to confirm that my own DNA has not contaminated the samples that I have been working with. The only way to do this is to perform a genetic fingerprint on my own sample and compare it to the working samples. Although I am the only one who uses the information it is written down to document the full procedure. If my employer or insurer happened to find an underlying genetic problem, such as a risk of cancer, heart disease, or diabetes, previously they would have had the right to terminate my employment or coverage in order to save themselves the problem in the future.

There are still some questions that were not answered in the bill including life insurance, but a gaping hole in employee and patients rights has been closed.

The bigger debate surrounding this issue should be under what circumstances should it be right for health insurers to decline coverage? Under a more sophisticated and consumer friendly system, such protection would be completely irrelevant, as nobody could arbitrarily be declined care. The Congress has put a band-aid on a system that needs a complete reconstructive operation, but until there is an administration in the White House who cares to acknowledge the damage a market-driven system has inflicted on America's health and pocketbooks, this looks to be all Congress can do.

I'll take a quote from Barack Obama's new book, The Audacity of Hope, to explain a pragmatic way to look at the healthcare problem for those that really think accessible, affordable healthcare should be spurned in favor of a pay-or-die attitude.
"Given the amount of money we spend on health care (more per capita than any other nation), we should be able to provide basic coverage to every single American. But we can't sustain current rates of health-care inflation every year; we have to contain costs for the entire system, including Medicare and Medicaid. With Americans changing jobs more frequently, more likely to go through spells of unemployment, and more likely to work part-time or to be self-employed, health insurance can't just run through employers anymore. It needs to be portable." (The Audacity of Hope, p. 184)

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