THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Thursday, January 19, 1995 TAG: 9501190390
SECTION: FRONT PAGE: A1 EDITION: FINAL
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: Medium: 79 lines
The latest discovery in genetic research - a gene that predicts a woman's risk of breast cancer - has prompted breast cancer activists to descend again on the General Assembly.
This time the issue of discrimination.
The Virginia Breast Cancer Foundation, along with state Sen. Janet Howell, a Democrat whose districts include parts of Arlington and Fairfax, are concerned that women carrying the gene could lose their health insurance, jobs or housing.
They want to establish a committee, composed of breast cancer activists, medical ethicists, anti-discrimination lawyers and politicians, to study the issue and recommend legislation in the 1996 session to protect women from discrimination.
Breast cancer activists, including the foundation, have a record of success in lobbying the General Assembly. Last year saw the passage of a bill requiring that Virginia health insurance companies offer policy riders covering autologous bone marrow transplants, a treatment of last resort for breast cancer victims.
This year's bill was initiated by former foundation president Mary Jo Ellis Kahn of Richmond, herself a breast cancer survivor. She got the idea when she thought about volunteering for clinical trials with the breast cancer gene project.
She didn't, she said, because she was worried that her two daughters might lose their health insurance if she carried the gene.
``If people hesitate about joining clinical trials because they're afraid of losing their health insurance if they test positive, the research will progress at a snail's pace,'' she said.
Last year, scientists found the exact location of the breast cancer susceptibility gene, called BRCA1. Women who carry the gene have an 85 percent lifetime risk of developing breast cancer, compared with the 13 percent risk all women have of developing the disease.
Their research is part of the Human Genome Project, a 15-year, $3 billion effort to map the entire genetic blueprint of the human body.
Such research has led to a growing awareness across the country of the dangers involved in it, said Wendy McGoodwin, executive director of the Council for Responsible Genetics, based in Cambridge, Mass.
The 11-year-old council works on privacy and discrimination issues as they relate to genetic testing.
Virginia's movement, she said, ``is consistent with the national concern around the potential harm that may come from learning more about our genetic makeup, particularly in terms of discrimination and insurance.''
Ohio was the first state to pass genetic-discrimination legislation, which bars health insurers from using genetic test results to make underwriting decisions.
Last summer, California passed a similar, albeit broader, law, that refers to genetic information - including family history.
Oregon has an employment discrimination law barring employers from using genetic information in hiring, promoting or termination decisions, the only state with such a law, she said.
Kahn hopes to see similar anti-discrimination laws in Virginia. And she agrees that it will probably need to expand to encompass all genetic testing, not just for breast cancer risk.
The protection may need to extend to the federal level, too, she said. And it's one of the issues the National Action Plan on Breast Cancer, formed a year ago by President Clinton and on which she serves, will be examining. by CNB