Genetic nondiscrimination in health care, Part I
Summary: The Genetic Information Nondiscrimination Act is stagnating in the Senate. But should it pass? Or should insurance companies be able to use your genetic info to calculate premiums? Today’s post is part one of a two-part series that explores the issue.
Last November, Bernadine Healy, M.D. of the US News and World Report commented on the impeded progress of the Genetic Information Nondiscrimination Act (which, as of today, is still being held up in the Senate). She describes specific benefits of genetic testing—specifically, the ability to act preventatively in risk areas:
Genes are not crystal balls. But they can be red flags signaling susceptibility to disease—and early preventive steps can be lifesaving. An example: Patients found to have genes predictive of colon cancer can cut the chances of getting the malignancy by undergoing a yearly colonoscopy that also removes any developing cancer-prone polyps.
Dr. Healy goes on to look at the real concerns about discrimination based on genetic information:
Francis Collins, director of the National Human Genome Research Institute, will tell you the worry out there is real. To protect their privacy, some patients use assumed names when tested for breast cancer genes or ask their doctors to lie for them about positive disease-related gene results so insurance companies won’t know. Lots of others don’t even seek their genetic info for this reason. NIH has shown that nearly half of family members at high risk for inheriting a cancer-producing mutation were unwilling to participate in any part of a clinical study because of a fear of genetic discrimination…
Getting a handle on such imperfection is an insurance actuary’s dream, and gene information is already being used in deciding whether to sell someone life insurance, particularly when the benefits are large. Some argue that even for health insurance, those with better genes should not be forced to pay the same high premium as those who appear to be more susceptible to disease.
There are two major issues with this situation: the health care system and the working definition of discrimination. I’ll look at discrimination today and health care tomorrow.
Discriminate: 1 recognize a distinction. 2 make an unjust distinction in the treatment of different categories of people, especially on the grounds of race, sex, or age. (Oxford English Dictionary)
Historically, legal protection against discrimination, like the Civil Rights Act, has had an overriding characteristic: membership in the group was irrelevant to the activity in question (e.g., the mental and physical ability to vote has nothing to do with the state of being black).
I’m about to propose a scenario that may surprise those of you who are familiar with my way-liberal tendencies—prepare yourselves.
Scenario A:
IF
Your genes provide specific information about your health, and
The U.S. health care system is what it is (profit-based and free market)
THEN
Of course premiums should be influenced by your genes.
Why wouldn’t they? The job of the insurance companies is to weigh probabilities. Your age, your medical history, your gender, whether you smoke… these are all legitimate criteria in determining the size of your premium. Why wouldn’t valid, predictive information about your genes qualify?
Likewise, it would make sense for insurance companies to offer premium incentives to engage in appropriate preventative activity.
Remember the requirement for legal protection: irrelevant to the activity in question. Surely your genetic information is relevant to the future state of your health.
Is it possible that our sense of ‘unjustness’ might be misguided?
What if we called it ‘reward’ instead of ‘discrimination’? People with superb genes get their premiums lowered; all others stay the same. Would that make it more palatable?
No way.
If it were, people would soon forget their baselines—all the no-good-gene people would know is that they pay more than their good-gene neighbors, and the resulting sentiment would be the same as if they had been penalized.
No, I’m afraid that, under the current health care system, it makes perfect sense to incorporate genetic information when determining premiums. But this, of course, brings me to the current health care system, which I’ll address tomorrow.
In the meantime, I’ll leave the question with you: do you think insurance companies should be able to adjust your premiums based on your genes?
