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Why GINA Is So Important

President Bush signed the Genetic Information Non-discrimination Act into law on Wednesday, which will protect Americans from prejudicial treatment by employers or insurance companies based on their DNA.

The Genetics and Public Policy Center explains that public concern over genetic discrimination is not just limited to mainstream coverage of individual stories. According to a 2007 poll from the Center, “92 percent of Americans are concerned that results of a genetic test could be used in ways that are harmful to them.” They explain: “GINA’s passage should allay public fears of genetic discrimination, allowing individuals to take advantage of the genetic tests that are now clinically available for approximately 1500 diseases.” (They also provide helpful breakdown of what GINA does and does not do.)

But this groundbreaking piece of legislation isn’t just important because it allays public concern.

GINA rationalizes a patchwork of state-level laws, providing guidelines for businesses across the country, and establishing a clear Federal interest in protecting citizens, advancing genetic research, and opening doors to better medical care. As Jonathan Moreno and Mike Rugnetta noted in their recent CAP report on “Genetic Non-Discrimination“:

This fear of discrimination could lead to an under-utilization of genetic tests by patients, which would ultimately hurt employers and insurers, too, since patients will not be able to take preventative measures that could eliminate the need for expensive care, medical leaves, and sick days down the road. Although current state and federal laws do provide patients with some protection from genetic discrimination, they still remain inadequate and vague.

As Ricki Lewis explained in a recent Science Progress column, the impact of genetic testing reaches back several decades. And genetic counselor Barbara Bernhardt explained in a recent interview how genetic testing already helps patients identify susceptibilities for cancer, Alzheimer’s, and Parkinson’s disease.

GINA is a major piece of civil-rights legislation. Moreover, Michael Stebbins of Scientists and Engineers for America points out, “This is the first piece of forward-looking civil rights legislation the U.S. has ever passed.”

GINA advances medical research that is happening right now, and will pave the way for research to come. The law will provide a framework offering legal protection and piece of mind for participants in large-scale genetic research projects, and these studies will offer insight beyond the function of individual genes. Research currently underway at the intersection of biological and information sciences demonstrates that patterns of genes distributed through an individual’s DNA code for personal characteristics or genetic disorders. Across a population, these patterns are called “copy number variation,” and understanding them requires large test groups. Nancy B. Spinner talked with Science Progress about the research findings and applications of this new work.


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