GINA to the Rescue?
While some see personal genomics as ushering in a new era of personalized health care, it also raises the specter of discrimination on the basis of genetic data. Conceivably, health insurance companies could start to consider a positive SNP test for a disease to be a pre-existing condition, for example. Or an employer might not hire someone who carried an increase risk of a mental illness, according to their genetic data. To answer some of these concerns, Congress passed GINA, the Genetic Information Nondiscrimination Act, in 2008.
But as Hsu points out, it's only a first step. "As it stands, it only applies to health insurance coverage and to employer discrimination based on genetic information. It doesn't currently apply to life insurance or long-term-care insurance, things that people's decisions might be affected by because of genetic information." He also points out that GINA only deals with the approval or denial of health care coverage, leaving insurance companies and health plans free to charge higher premiums for those they deem risky.
The issue of employment discrimination is particularly complex, according to David Magnus. Imagine that a certain subgroup in the general population is likely to become ill in the presence of some pathogen which is otherwise well tolerated by people. If there was a test for that variation, a company might very well want to screen potential employees for it, if the work environment would expose the employee to the pathogen. "But then that raises questions about who has the authority to make those decisions," Magnus says. "Can you force that testing on people against their will? If they decided that they needed the job, that it was much better paying than any other job in town, could they decide that it's worth it to get exposed to the risk? These are all the kinds of concerns that people have been very worried about."
Magnus also points out that the medical community may not be prepared to deal with this flood of new data. "This is a huge problem, because then what are you supposed to do with this data? If you can't understand it, and a clinician can't understand it, what are we going to do with it? I'm very concerned that people are going to believe that they are at increased risk or decreased risk [for a disease], when they aren't."
Brave New World, V2.0
Although discrimination on the basis of genetic information could be a serious issue, there is another use for genetic testing that's starting to emerge, with disturbing implications: designer babies. Prenatal screening for genetic abnormalities in high-risk parents, such as those who carry the genes for Tay-Sachs disease, is commonplace these days; although the moral dilemma that a positive result can create is still a difficult issue. But as more and more traits are testable through SNPs and other genetic markers, it is becoming possible to design the child you want.
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