Genetic information gains federal bias protection
GINA prevents discrimination in work, health
Genetics research tells us that every person has as many as six — or even more — genetic mutations placing him or her at risk for some disease. That could mean six opportunities to get sick, or six opportunities for research into a cure; a bill awaiting President Bush's signature when Medical Ethics Advisor went to print is aimed at making sure it doesn't mean six opportunities to discriminate on the basis of genetic information.
The Genetic Information Nondiscrimination Act (GINA) has had stops and starts in the past few years, coming close to passage in 2007; in April 2008, the House and Senate both passed the bill (the Senate unanimously, the House 414-1) and sent it to President Bush, who vowed earlier this year to sign it should it clear Congress.
GINA, called by some the "first civil rights act of the 21st century," prohibits genetic information uncovered to alert people to potentially serious medical problems from being used to hire, fire, promote, or assign jobs or insurance coverage. Health insurance cannot be denied under the bill; however, long-term care and life insurance are not affected by GINA, and the new act does not offer protection to people already ill with an inherited disease.
"This is a great gift to all Americans. It will make it safe for Americans to benefit from the medical results of the Human Genome Project, in which they invested so much," according to Francis S. Collins, MD, PhD, director of the National Institutes of Health National Human Genome Research Institute. "We are living in a remarkable time when it is becoming possible to look into our own genetic makeup to predict the ills to which we may be at risk, to prevent many diseases from occurring, and to design treatments based on our DNA blueprint that will both effectively treat the illnesses while avoiding undesirable side effects."
But supporters of the legislation say that blocking the way to the trove of information provided by genetic testing is the fear — based on real experience — that the knowledge can be used to deny jobs or to deny or increase the cost of health insurance.
Knowledge no longer a handicap?
According to information lawmakers provided while the bill was in discussion, genetic discrimination has been present for as long as genetic disorders have been detectable. In the 1970s, some insurance carriers were found to have denied coverage to people who carried the gene for sickle cell anemia; a California laboratory and a national railroad line secretly tested workers for genetic disposition to serious diseases.
The National Human Genome Research Institute reports that 41 states have laws in place prohibiting genetic discrimination in health insurance, and 31 states have laws against genetic discrimination in the workplace. GINA is the first federal law to address discrimination based on genetic information.
"This bill could just as well be known as the bill to protect people with DNA, and that would be all of us," says Collins. "Since each of us has dozens of genetic variations that may put us at risk for disease, we all would have had a reason to be concerned about the possible misuse of genetic information."
Not all experts agree that discrimination based on genetic information is the threat that others believe it is, but nonetheless, says Stanford University law and genetics professor Hank Greely, JD, the law should reassure those concerns.
"Although there isn't evidence of significant amounts of genetic discrimination in employment or health insurance, and there are good reasons to think it won't become a major problem, GINA is a good thing because it will help assuage fears that are keeping some people from useful genetic testing or genetics research," says Greeley. "The fears are exaggerated, but GINA is a good way to lay them to rest."
Proponents of the legislation say without the fear of health insurance and employment repercussions, more people will opt for genetic testing, giving researchers more to work with in developing therapies for inherited diseases such as diabetes, Parkinson's, and breast and prostate cancers.
Prior to passage of the new act, one of its backers, U.S. Rep. Pete Sessions (R-TX) said the fear of misuse has prevented many people from seeking genetic testing, adding, "The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike."
And according to the National Institutes of Health, nearly one-third of women offered genetic testing for breast cancer risk turn it down, citing insurance concerns.
But Greeley says he's not sure it's accurate to pin reluctance to undergo testing on one reason alone, and one reason for that hesitation might be the fear of learning too much.
"I wouldn't lay too much stress on the reasons people give for not getting genetic testing," he says. "People have lots of reasons, including family issues and personal psychological concerns, to be wary of learning too much about their futures.
"It may be easier to tell a survey that 'I'm worried about genetic discrimination' than that 'I'm worried about whether my spouse will leave me or whether I have passed something bad on to my children.'"
Sources
For more information, contact:
- Hank Greely, BA, JD, Deane F. and Kate Edelman Johnson Professor of Law; professor, Stanford University Department of Genetics; Stanford, CA.
E-mail: [email protected].
- Francis S. Collins, MD, PhD, director of the National Institutes of Health, National Human Genome Research Institute, Bethesda, MD. E-mail: [email protected].
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