Genetic protection

Science goes where it can, making advancements into the smallest particles of the human body, identifying individual genes that control our futures with the hope that greater understanding will allow people to live longer, healthier lives. But there are unintended consequences to this new information.

One of them is the way insurance providers could use genetic information about a patient to deny coverage. Rep. Louise Slaughter of New York and Sen. Olympia Snowe recently introduced an important bill that gives patients more control over genetic information, including who has access to it.

Sen. Snowe didn’t have to look far for support on this issue. The senator recently testified that Dr. Tracy Weisberg, the medical director of the Breast Cancer Center at Maine Medical Center, has offered screening for the breast cancer gene to 35 women but only two have accepted. The reason? They were afraid they would lose or be denied health coverage if they were found to have the gene.

The fear of losing coverage is a substantial concern and has serious implications for a person’s health. A survey by Science magazine last year found that 22 percent of people with known genetic conditions were denied coverage based on the genetic information. If patients become unwilling to discover or disclose genetic results because of this, the ability of doctors to help them is far more limited.

The bills in the House and Senate prohibit health-insurance providers from denying coverage or changing the terms of the coverage, premiums or conditions for individuals or family members on the basis of genetic information. They also prohibit insurers from releasing genetic information without a person’s written consent. The measures have been supported by President Clinton and 80 organizations, including the American Cancer Society and the American Medical Association.

Patient protection is especially important now that health-maintenance organizations have heightened awareness around cost issues — the competition for HMOs to sign up as many healthy people as possible is more intense than ever. Sen. Snowe and Rep. Slaughter are correct to assume that Congress has a duty to ensure that potentially less-healthy people are not shut out of the system.

Discrimination based on genetic tests should be unacceptable to HMOs and to the general public. The bills before Congress make certain that people with the potential for genetically based illness can still get the coverage and care they need.