"Insurance is a subject that scares a lot of people," says Karen Rothenberg, director of the Law and Healthcare Program at the University of Maryland School of Law in Baltimore. Indeed, it ripples far beyond the world of HMOs and primary care physicians. If genetic testing becomes a widespread reality, employers that are self-insured might be tempted to drop employees who pose a financial burden.
And for insurers underwriting life and disability policies, it could significantly alter the dynamics of the marketplace. "No insurance company wants to issue a policy to a person who has a high risk of disease," says Rebecca Locketz, legal director for the American Civil Liberties Union Workplace Rights Project in Princeton, New Jersey. Such a scenario could make certain types of insurance "unavailable or cost-prohibitive for certain people."
Another nettlesome issue is how genetic information should be managed. Private insurers typically object to individuals having medical information and not sharing it. Thomas H. Murray, director of the Center for Biomedical Ethics at Case Western University in Cleveland, refers to this as "adverse selection." Quite simply, it forces an insurance company to accept high-risk clients without charging a price reflective of the risk. Charging higher rates to those who are a good risk makes up the difference.
Nobody's exactly sure how insurance companies should administer genetically based tests. One alternative is to allow the insurance industry to test individuals-something that could dissuade many from taking beneficial tests for fear of privacy and discrimination. Another tact would be to require those applying for insurance to reveal past genetic test results. A report published by New Brighton, Minnesota-based SmithKline Beecham Clinical Laboratories in 1995 found that no matter which direction things go, one enormous problem remains: "Most disorders result from an interaction between genetic predisposition and environmental factors, so there's often no clear boundary between genetic and nongenetic conditions and tests."
Finally, even if genetic testing were to result in an employee being able to seek therapy for a genetically disposed condition, there's angst over the type of treatments available and how often a patient could seek therapy. Says Rothenberg: "There's nothing stopping an employer from saying, 'We're not going to cover a particular benefit,' or, 'We're going to have to cap a particular benefit.'" If you're unfortunate enough to have a predisposition to breast cancer, your doctor might recommend a mammogram every year, but the insurance provider might insist on one every three years. That could have a huge impact, from both a medical and financial standpoint.
The only thing almost everyone can agree on is that the issue might ultimately be resolved by some form of an American universal health-care system. Richard Coorish, spokesman for the Washington, D.C.-based Health Insurance Association of America believes that screening for insurance purposes would be eliminated under universal health care. "The whole issue could become moot." And that could finally pave the way to widespread genetic testing without the stigma.
Workforce, July 1997, Vol. 76, No. 7, p.42.