Insurers’ Use of Gene Tests: Curbs on Abuse Are Needed
Judging people by the makeup of their genes rather than the conduct of their lives has long been portrayed as soulless. Think of the ghostly Social Predestination Room of Aldous Huxley’s 1932 novel “Brave New World” or, in the new movie “Gattaca,” the cold, radium-green Gattaca Corp., where genetic “in-Valids” are weeded out.
Now, a similar practice--using genetic information to determine whether to insure people and how much to charge them--is actually becoming popular among health and life insurers. Unlike the “Gattaca” technology, real genetic tests cannot identify genes for complex behaviors like aggression. But with 450 tests now available to determine people’s susceptibility to diseases like Alzheimer’s, Huntington’s and breast cancer, insurers are eager to employ the tests for risk assessment.
Legislators, however, are commendably just as eager to stop them, and bills to do that are gaining momentum in Congress. The House version, sponsored by Rep. Louise McIntosh Slaughter (D-N.Y.), has 176 co-sponsors, while its Senate counterpart, sponsored by Olympia J. Snowe (R-Maine), received support at a Senate hearing earlier this week. Both would prohibit insurers from discriminating on the basis of genetic information and from requesting or requiring the disclosure of genetic information.
Some insurers require genetic tests as a condition of coverage, and all insurers can purchase the results of genetic tests--taken voluntarily by people who want to know whether they’re at risk--through private clearinghouses like the Medical Information Bureau. While some states have laws partly protecting against genetic discrimination, only federal legislation can extend protections to all workers, for a loophole in federal benefits law exempts large self-insuring employers from state privacy protections.
Health and life insurers argue that genetic records are as indispensable to them as driving records are to auto insurers. But while automobile insurers have long spread risk (charging more for adults to make up for losses with teenagers, for instance), health and life insurers want to single out individuals with genetic risks and either charge them exorbitantly or decline to cover them at all. People may also be emotionally harmed when insurers not only decline to cover them but tell them why: that they are at risk of a deadly, unpreventable disorder like Lou Gehrig’s disease.
Rep. Brian McCall (R-Texas), a former insurance executive and the author of a Texas law against genetic discrimination, explained clearly why such laws are needed: “The purpose of insurance is to spread risk. But with genetic tests, insurance companies can virtually eliminate the guesswork in underwriting. They can seek out people who are genetically pure, creating a ghetto of the uninsured, because they will know who is likely to get a particular disease at a particular age.”
Moreover, there is logic in adjusting insurance rates for something people can influence, such as a driving record. It is clearly wrong to penalize them for something they have no control over, their genetic inheritance. The practice is doubly wrong because scientists say all humans carry genes that put them at heightened risk for certain diseases; there is thus a basic unfairness in penalizing those with faulty genes that we know about but not those with faulty genes we have yet to discover.
Some in Congress say it’s premature to pass any legislation about genetic discrimination because there is still wide disagreement on many vexing questions. But we recoil for good reason from the sort of “selection” implied in genetic risk testing by insurers or employers. Genetic privacy is needed until society arrives at common ethical decisions on whether such testing ought to be used at all outside medical research for cures.
