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Get to know GINA: What it does -- and doesn't do
Genetic nondiscrimination act shouldn't be oversold
The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans against discrimination in employment and health insurance coverage based on genetic information.
It also provides new protection to potential subjects in genetic research. There is hope that GINA's passage last year may make people less fearful of participating in such studies.
But the challenge for IRBs is to explain that new protection without overstating it in the informed consent process, says Lauren Dame, JD, MPH, associate director for the Center for Genome Ethics, Law and Policy at Duke University in Durham, NC.
"While IRBs should feel that the risks of informational misuse of genetic information have gone down, it's not zero," Dame says. "So even though GINA has passed, it does not offer absolute protection for what is really quite personal and sensitive information."
The law, which has been in the works for several years, was passed last year, but began to take effect this year, with full protections scheduled to be in place by May 2010.