Passage of the Genetic Information Nondiscrimination Act (GINA) would lessen fears about genetic testing and help usher in a new era of personalized medicine. But GINA is only the first "big step," say experts at the Duke Institute for Genome Sciences & Policy (IGSP).
"The enactment of national legislation to protect all individuals from genetic discrimination will not just benefit a select few who are affected with a genetic disease," says Susanne Haga, senior policy analyst and assistant research professor at the IGSP. "All of us have genetic miscues in our genomes that may one day lead to disease."
GINA prohibits insurers and employers from discriminating based solely on a person's genetic information. The bill has foundered since its introduction more than a decade ago despite widespread, bipartisan support. However, GINA is expected to reach the Senate floor for a possible vote as soon as this week.
Even if genetic discrimination is rare in practice, Haga says, "fear of discrimination could cripple important genetic-related technologies. Without national protections, individuals may decline to participate in genetic research studies or may compromise their health by refusing testing of their genomes."
Indeed, says Robert Cook-Deegan, director of the IGSP's Center for Genome Ethics, Law & Policy, "several of our case studies on access to genetic testing for various conditions show that fear of genetic discrimination is driving many to forgo testing that might have benefit for them, or to pay for it and keep it out of their medical records. Those fears are not always for themselves, but also for family members."
While passing GINA is clearly a good idea, he says, it won't be the end of the story.
"GINA would help with health insurance, the primary concern, and discrimination by employers, but it does not address long-term care insurance -- the market where the most potential problems could arise," Cook-Deegan says. "It's a big step in the right direction, but it would still leave several other steps to be taken regarding long-term care insurance, life insurance and disability insurance."
"Even the passage of GINA or similar legislation is no guarantee of protection from genetic discrimination," adds Huntington Willard, director of the IGSP. "It would, rather, provide legal recourse for those who experience discrimination. The strength of any such law would only become evident through testing in the judicial system."
In addition to his role as director of the IGSP, Willard served on the Department of Health and Human Services Secretary's Advisory Committee on Genetics, Health and Society from 2003-2007, which made GINA's passage its top priority.