Managed Care - July 2008 - (Page 34) surance Portability and Accountability Act of 1996 (HIPAA) from considering genetic GINA takes a bow test results, or to other coverage as they exy the time lawmakers passed the Genetic Information perience life’s various transitions: changing Nondiscrimination Act of 2008 earlier this year, they had jobs, graduating, marrying, and so on. boiled it down to a few key measures. In specific, insurers were “Most genetic tests we’ve seen so far are prohibited from using genetic test results to establish eligibility predicting long-term risks.” for an individual policy, to set premiums based on test results, The biggest concern for the underor to impose preexisting-condition exclusions. The same rules writing community came during GINA’s apply to Medicare policies. Federal law already provides the early development, says Wildsmith, when it same protections for group health plans. Employers face an even more stringent set of rules, including appeared that genetic data would be deprohibitions against hiring or firing anyone based on genetic fined in a way that included many of the test results. Employers are also prohibited from discriminating health factors — cholesterol levels, for exagainst employees by adjusting their compensation because of ample — that are in use now. After 13 years test results or altering their opportunities at work in any way. of discussion and negotiation, Congress Labor unions are prevented from making membership deciaccepted a more narrow definition that also sions on test results. And any genetic test results that employers was acceptable to the industry. and unions do have will have to be kept separately from emThe biggest impact of the new law, he ployment records and handled as a confidential medical record. adds, may ultimately be on the way conCongress was persuaded by the experts in the field that fear sumers buy insurance. of retaliation was holding many people back from taking part in “If everybody knows if they are going to new genetic studies or causing some people to get their tests be sick or healthy, only those expecting to done confidentially. Now that the bill has been signed by President Bush, researchers will look at whether people actually have be sick will buy insurance,” says Wildsmith. been reassured. And that could set up an enormous problem with adverse selection, adding fuel to the calls for insurance mandates. “One of the appart of a medical history that failed to come to proaches offered has been to say, we’ll make the light when the policy was issued. healthy people buy insurance, too.” But the use of genetic data up to now has never sparked a controversy. Only one genetic discrimination lawsuit has been reported. No more unknowns Underwriters have been able to factor in GINA’s passage has been one of the abidthe results of genetic tests for individuals — ing passions of Francis Collins, PhD, the govuntil now — but could never require them, ernment’s lead geneticist and director of the says Tom Wildsmith, an expert on underNational Human Genome Research Institute, writing who represents the American Acadwho foresees a day when genetic tests will emy of Actuaries Health Practice Council on provide a blueprint for maintaining an indithe issues presented by genetics. In the overvidual’s health, guiding preventive measures all scheme of things, though, the data haven’t and dictating therapies. The new law, he Medical records played much of a role in deciding who gets are accessible, maintains, will get us to that day much faster. coverage or how much they pay for it. “The biggest impact of GINA may be that but you can’t use Not many tests have been available, he ex- information people will no longer feel they need to refuse plains. More important, the data show a per- obtained from a testing or be tested anonymously based on the son’s medical horizon, and insurers are always genetic test, says fear of losing their health insurance,” says Tom Wildsmith M.K. Holohan Quattrocchi, the institute’s more concerned with near-term costs. of the American senior health policy analyst. “Individual insurance is more of a short- Academy of People will be more likely to volunteer for to mid-term medical cost,” says Wildsmith. Actuaries. genetic research projects and to use them to Individuals rarely hold on to those policies for assess their health risks. long, moving soon to group plans where underBut as insurers are denied the right to charge writers have long been excluded by the Health In- B 34 MANAGED CARE / JULY 2008
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