As genetic testing has become more affordable, the potential to diagnose and prevent debilitating diseases has increased, but so too has the darker possibility that health care providers and employers can gain access to sensitive information about an individual that might bias health-insurance coverage or human resource decisions. The Genetic Information Nondiscrimination Act (GINA), which was signed into law by President George W. Bush and which took effect last week, was drafted in response to these concerns.
The legislation prohibits employers from requesting genetic testing of employees or from using individuals' genetic information when making decisions concerning hiring, firing, job placement, or promotions. The law also bars group health plans and health insurers from denying coverage to a healthy individual, or charging that person higher premiums, based solely on a genetic predisposition to developing a disease in the future.
"Initially the goal of GINA was to alleviate the fear that people had about genetic discrimination at a time when genetic testing wasn't tremendously common, but what's happened in the years since [the legislation was set in motion] is we've seen an explosion in the availability and variety of genetic testing," says Susannah Baruch, an attorney specializing in health law who counseled the Genetics and Public Policy Center at Johns Hopkins on the drafting of GINA.
Assuming that genetic testing will only become more prevalent in society, the law is intended to prevent future abuses of genetic information. "A few employers have tried to use [genetic information] in the employment process, but it's certainly not a widespread practice," says Michael Aitken, the director of government affairs at the Society for Human Resource Management.
Even if an employer makes every effort to adapt their health care forms and policies in accordance with the law, there are all sorts of ways they could come into possession of genetic information, whether by reading the obituary of an employee's relative or overhearing about a condition around the water cooler. What happens then?
"The concern there is that simply having the information could put the employer or the health care plan at risk for a potential lawsuit down the road if somebody claims that they were discriminated against," Aitken says.
The possibility of a new class of employment discrimination litigation--one based on genetics--could have an especially negative effect on small businesses. "I think for small employers those concerns are of particular importance," says Baruch. "Because of the smaller environment, people know about each other's families, and you want to encourage people to have open and friendly relationships on the job."
Baruch notes that language was included in the legislation to address this scenario of accidentally acquired information. Still, Aitken recommends that employers keep a healthy separation between any genetic records and HR files now that the legislation has been enacted.
The law will only apply to businesses with more than 15 employees, as do many other civil rights laws. Baruch says this is partly in an "effort to minimize the burden on smaller employers."