'Patients' Bill Of Rights' Could Be A Warm-Up For Emotional Genetic Testing Issue

By

Washington

While the House of Representatives is set to take up the controversial issue of a patients’ bill of rights this week, a House panel began hearings last week on a health issue that could prove to be just as troubling and emotional: genetic testing.

The subject of the hearing was legislation, H.R. 602, introduced by Reps. Louise Slaughter, D-N.Y., and Constance Morella, R-Md., that would bar health insurers from discrimination based on genetic information.

“By banning genetic discrimination, we are simply asking insurers to continue covering the exact same people, under the exact same conditions, they are covering today,” says Slaughter.

She says that genetic discrimination is not just a “potential,” but is actually happening today.

Slaughter cites a 1997 article appearing in The New York Times claiming that an unnamed health insurer not only refused to pay for a prophylactic double mastectomy, but also canceled the policy of the patient when she presented the company with genetic information that she faced a dramatically increased risk of cancer.

“This story encapsulates Americans worst fears about the potential abuse of genetic information,” Slaughter says.

But Donald A. Young, interim president of the Health Insurance Association of America, Washington, says that while legislation such as H.R. 602 is well intended, it is unnecessary and would end up harming consumers.

Currently, he says, insurance companies are barred by federal law (the Health Insurance Portability and Accountability Act of 1996) from discriminating against those with group health coverage based on genetic information.

Moreover, Young notes, HIPAA also protects individuals who were previously covered in the group market.

But in detailed testimony, Young notes that for insurance products not covered by HIPAAsuch as disability and long-term careconcerns about the use of genetic information run in both directions.

“While there appears to be considerable concern about the potential for insurers to discriminate against consumers based on genetic information, there appears to be a conspiracy of silence regarding the potential for individual consumers to use genetic information in a way that disadvantages insurers and their other policyholders,” Young says.

The potential for adverse selection, he says, is especially a risk for products that are voluntarily purchased by individuals who can choose the timing of their purchase, as well as the extent and duration of coverage.

“In these cases, individual applicants have the opportunity to make decisions based on risk characteristics that are known or suspected by them but unknown to the insurer,” Young says.

High-cost individuals would purchase insurance at average premium levels, he says, forcing premiums for all policyholders to rise.