Genetic testing is a key advance in preventative health care. But opponents of DNA testing worry about privacy issues–that employers may use genetic data in making employment decisions. The Genetic Nondiscrimination Act of 2007 (GINA) is intended to prevent that.
The Act was unanimously accepted by the Senate with a vote of 95-0. After final approval from the House, it will go to the President’s desk for signature. It could be signed into law as early as next week. The act will protect individuals against discrimination based on their genetic information when it comes to health insurance and employment. These protections are intended to encourage Americans to take advantage of genetic testing as part of their medical care. The purpose of GINA is to ensure that anyone who gets genetic screening tests will be protected from having that information shared with health insurers or employers. Up until now, individuals who tested positive for a certain type of cancer gene could be denied insurance coverage or employment based on his or predisposition to developing cancer years down the road.
“It means that people whose genetic profiles put them at risk of cancer and other serious conditions can get tested and seek treatment without fear of losing their privacy, their jobs, and their health insurance,”
said Ted Kennedy (D-Mass.).
The debate is not a new one–the bill was rejected more than 10 times before it passed. And during those 10+ years, Delaware passed its own genetic antidiscrimination law. Delaware is one of 35 states to prohibit genetic discrimination in employment. State laws typically protect “genetic information.” A number of states, including Delaware, have passed or are considering bills that expressly include and requests for genetic services. The Delaware law also makes it unlawful for an employer to “intentionally collect” genetic information unless it can be demonstrated that the information is job-related and consistent with business necessity or is sought in connection with a bona fide employee welfare or benefit plan.
Of the 35 states with these laws, though, there has not been a single suit filed on the grounds of “genetic descrimination,” although the EEOC did settle a genetic-discrimination claim that was filed under the Americans With Disabilities Act. In that case, the employer, Burlington Northern Santa Fe Railroad, was alleged to have obtained blood samples from employees that would later be used for genetic testing, unbeknownst to the employees. The employer ceased the conduct within days of receiving the EEOC’s complaint and eventually settled the suit.
The National Conference of State Legislatures maintains a comprehensive website on laws dealing with genetics and genetic testing if you’re interested in where your state currently stands.
But the most detailed resource, by far is that of the National Human Genome Research Institute, (NHGRI) at genome.gov. The NHGRI’s site inlcudes dozens of helpful explanations about just about everything genetic–including the legal, social, and ethical implications of genetic testing.
To review GINA’s passage through the House and Senate, visit thomas.loc.gov.
From a women’s health perspective, U.S. News & World Report’s Deborah Kotz’s article is a worthy read.
And, as always, our friends at HR Hero has a whole cache of easy-to-read and to-the-point articles on the Genetic Testing page of their website.