The Genetic Information Nondiscrimination Act — A Half-Step toward Risk Sharing
By Russell Korobkin, J.D., and Rahul Rajkumar, M.D., J.D.
The New England Journal of Medicine
July 24, 2008
Consider three Americans — one with an increased genetic risk for colon cancer, one with a family history of colon cancer, and one with a colonoscopic finding of several large adenomatous polyps. Under the Genetic Information Nondiscrimination Act (GINA), which was recently signed into law by President George W. Bush, health insurance companies may not refuse to cover and may not raise premiums for the first two people, whose genetic information or family history puts them at higher risk for colon cancer. Insurers could, however, refuse to sell the third person an individual policy or could quadruple his or her premiums. If the third person is enrolled in an employer-sponsored group health plan, insurers could raise the rates for everyone in the group.
In making such distinctions, GINA is emblematic of this country’s piecemeal and inconsistent approach to health care policy, which makes little sense and leaves many Americans without access to care or in danger of financial ruin if they seek care. Our recent history is replete with examples of similar half-measures in health policy.
One response would be to retreat from the egalitarian impulse of GINA and leave health insurance to market forces, as we do with consumer goods. Health insurance risk would be priced as accurately as technology permitted, and patients would pay their own expected medical costs in premiums.
The better solution is to fully embrace the basic ethic of GINA and admit that the law’s distinction between genetic information and other immutable characteristics is arbitrary.
The arbitrary nature of the categories GINA creates suggests that we should fully commit ourselves to the step that the legislation approaches but is too hesitant to take: the prohibition of medical underwriting — the rating and pricing of health insurance on the basis of any health information, not just genetic information. Health insurance premiums should be assessed on the basis of a “community rate” and should be set the same for all people within a given age group — possibly with exceptions somehow made for risk factors that are deemed to be within each person’s reasonable control.
Moreover, to ensure that the costs of bad health are shared equitably, all Americans would have to be in the same risk pool. This would mean enacting a health insurance mandate either for employers or, if health insurance could be made affordable, for individuals — and specifying a minimum set of benefits that everyone would be required to have. Given the growing disparity between the cost of modern medicine and the incomes of many Americans, enforcing such a mandate would be difficult. Even with income-based subsidies, an individual mandate could place an undue financial burden on many families. Nonetheless, bringing everyone into the same risk pool is an important long-term goal.
With such reforms, GINA could become the first step toward a just and sustainable health insurance system. This approach would recognize that, because many of the most important determinants of health are beyond people’s reasonable control, no one should have to bear the costs of health care alone.
http://content.nejm.org/cgi/content/full/359/4/335
The need for the Genetic Information Nondiscrimination Act was obvious. The members of Congress recognized that it would be unfair for private insurers to discriminate against individuals based on their family history or genetic makeup. What is perhaps not so obvious is why Congress chose to ignore all other forms of discrimination by private insurers.
As this article states, medical underwriting should be prohibited in order to permanently eliminate private insurer discrimination. Then a universal risk pool must be established to distribute risk equitably. But for that to work, the authors acknowledge that there must be a mandate that everyone participates.
In recommending community rating and a mandate to participate, the authors further acknowledge that, even with subsidies, reform based on private plans will still place an undue financial burden on many families. That is still a form of discrimination.
What is it that holds back these authors, members of Congress, and others in the health policy community from stating the obvious? Legislating and regulating the private insurance industry may reduce but will never eliminate insurer discrimination; adopting a publicly-funded, single payer national health program would. Why do they choke up when that’s what they need to say?
