WASHINGTON, January 31 (Sputnik) — The United States need more comprehensive laws that would protect US citizens from inappropriate usage of their genetic information, President and Executive Director of Council for Responsible Genetics Jeremy Gruber told Sputnik News Agency Friday.
“We really need a comprehensive framework to govern the appropriate usage of genetic information, as it becomes more commonly used,” Gruber said.
Currently the United States operates under the Genetic Information Nondiscrimination Act (GINA) of 2008, which forbids to treat people genetically predisposed to disease differently in health insurance and employment, but doesn’t cover life, disability or long-term insurance.
GINA was founded in mid-1990s, Gruber pointed out, but genetics has come a long way since then and became more common in people’s daily lives. The ability to use that information inappropriately, therefore, is also becoming more of a concern, expert explained.
More comprehensive laws are needed to further fight genetic discrimination, expert said, adding that there have been about 200 complaints a year filed with the US Equal Employment Opportunity Commission over GINA violations, and the number will grow as genetic information becomes more pervasive.
“Unfortunately, the system for resolving GINA–related complaints with health insurance in the United States is not transparent,” Gruber said.
At the moment people are not allowed to pursue individual litigation and have to go through government authorities, which do not fully disclose information on what they are doing to raise awareness, so that more complaints can be filed.
Since 2008, only California has taken further effort to provide more comprehensive protection to it citizens. In 2011 local government passed a law which does address genetic discrimination in areas like long-term insurance. The Congress hasn’t yet built upon that model nationally.
