The general public has become increasingly aware of current genetic advances, and these new possibilities have created a very 21st century concern: fear of the misuse of one's genetic information. But after 13 years of debates and dead ends, the U.S. government finally signed and passed a long-awaited bill protecting Americans against genetic discrimination. The Genetic Information Nondiscrimination Act, or GINA, officially took effect on Nov. 21, 2009.
GINA makes it illegal for employers to request or use an individual's genetic information when making employment and job placement decisions. The bill passed unanimously in the Senate and by a vote of 414 to one in the House. President Bush signed GINA into law last year on May 21, 2008. The aim was to prevent discrimination based on genetic information that would limit, segregate or classify an individual in any way that would deprive him or her of an employment opportunity.
The legislation also prohibits health insurers and group plans from denying coverage or charging a healthy individual higher premiums based on genetic predispositions to developing a disease in the future.
Furthermore, employers and health insurers are banned from requesting family medical histories from individuals. They are specifically prohibited from offering rewards to individuals for giving out family medical histories when filling out health risk questionnaires or surveys for wellness programs.
There are a few exceptions. For example, GINA does not apply to the military or life insurers.
GINA allows individuals to take advantage of genetic counseling and personalized medicine without the fear of discrimination or misuse of their genetic information. The assurance of confidentiality also opens opportunities for genetic research and medical advances because individuals will be less reluctant to participate in genetic research studies.
While there have been many claims of genetic discrimination by health insurance companies or employers, there has never been a genetic-employment discrimination case brought before U.S. federal or state courts. According to the National Human Genome Institute, the Equal Employment Opportunity Commission (EEOC) settled the first lawsuit related to this type of discrimination in 2001. The suit was against the Burlington Northern Santa Fe Railroad for testing its employees without permission for a genetic condition that causes carpal tunnel syndrome. The employees were also secretly screened for medical conditions such as alcoholism or diabetes. The lawsuit inflamed arguments claiming that genetic discrimination was indeed a pertinent issue that needed to be comprehensively and objectively addressed.
"I'm surprised that [GINA] was passed because whenever something makes sense, such as a bill prohibiting the use of genetic information for employment decisions, I just assume it's going to be obstructed in Congress for years," junior Peter Corey said.
However, the idea of the legislature regulating genetic discrimination has been around for more than a decade. Since the Human Genome Project was launched in 1990, founders recognized that genetic discrimination and the fear of discrimination would limit or nullify the benefits of genetic research and advanced medical preventative and treatment methods.
As early as 1995, groups had presented the recommendations for protection that GINA now enacts. Policy forums and academic articles have also comprehensively analyzed and addressed these issues since the early '90s.
"Many people thought of [genetic discrimination] as a less immediate problem," said Maxwell Mehlman, professor of Bioethics and Law at Case Western Reserve University. "People were afraid of it; there were anecdotal accounts, but not a lot could be pinpointed. Proposals were reintroduced every year, but it never seemed to go anywhere.
"Also, in a number of states, measures were passed [to address genetic discrimination], so that took some of the pressure off," Mehlman continued.
The Americans with Disabilities Act (ADA) of 1990 also took some of the pressure off. The ADA protected individuals from discrimination on the basis of genetic information relating to illness, disease or other disorders. However, the focus of the act was not the protection of an employee's privacy. The Health Insurance Portability and Accountability Act of 1996, providing the first federal protections against genetic discrimination in health insurance, similarly did not provide any privacy protections.
"There was also [resistance] and concerns from employers and the insurance industry about whether this would be a serious problem for them," Mehlman said.
A major argument against GINA is that, without the ability to discriminate and create a pricing structure, health insurance premiums will be much higher for all healthy individuals. Employers also argue that asking for genetic information is necessary in some industries to determine an employee's genetic susceptibility to illness caused by exposure to workplace chemicals.
While GINA is a monumental step toward protecting individuals against genetic discrimination, there are still a few flaws in the legislation. In an op-ed for the LA Times, UCLA Law Professor Russell Korobkin uses an example to illustrate a major gap in GINA.
"Amy carries the BRCA1 gene, associated with an elevated risk of breast cancer," he wrote. "Beth has an aunt and a sister who had breast cancer. Cindy had breast cancer, which is now in remission. GINA offers protection for Amy and Beth, but not for Cindy."
Korobkin also wrote about possible negative consequences GINA could bring to health insurance. Aside from higher insurance premiums, he wrote that GINA increases insurers' incentives to discriminate against individuals who have modest health problems weakly related to expected future illnesses, because this is the only information they can use.
Whether or not GINA is a step in the right direction ultimately depends on who you ask, as the effects of the new legislation remain to be seen.
"I think [GINA is] going to be hard to enforce," Mehlman said. "Before, it was already very difficult to prove that genetic discrimination existed and that employers acted based upon genetic information.
"[In the end,] I think that GINA is more symbolic than anything else."
