Curb Bias Against Mutant-Gene Carriers
By Marlene E. Post. Marlene E. Post is national president of Hadassah, the Women's Zionist Organization of America.
FEARING HER PATIENTS will face discrimination from insurance companies,
Dr. Patricia Murphy - a geneticist at Albany Medical College - issues genetic tests every day with anonymous numbers instead of names. But, if patients test positive as disease carriers, there is still no guarantee they won't be denied health insurance - even if they never become ill, she says.
Seeking health information to make informed choices is a right that every citizen should have without fear of backlash. Grievously, however,
thousands of Americans face this dangerous dilemma: If they are tested and face discrimination by insurance companies because of their genetic makeup, they may lose the insurance that could ultimately help them get medical treatment.
This fear has been especially potent in the Jewish population since genetic researchers found that Jewish women of Eastern European descent may be at higher risk of inheriting certain breast cancer gene mutations.
Today, Johns Hopkins University released the newest cancer study tracking genetic predisposition in this Jewish population. The study found 6 percent were carriers of the gene mutation that causes familial colorectal cancer, soaring to 28 percent for those Jews with a family history of the disease.
As genetic science slowly unwinds the hereditary mysteries of disease, we get information that can lead to prevention - and even to cures. Particularly with a disease such as colorectal cancer, doctors offer an excellent prognosis if the disease is caught early. Unfortunately, however, the path from health knowledge to disease prevention is often littered with dangers.
A well-documented history of health-insurance discrimination against carriers of sickle-cell anemia, Huntington's disease, cystic fibrosis and other genetic disorders confirm our fears. A recent Georgetown University survey revealed that 22 percent of test participants with known genetic predispositions were denied insurance coverage. An earlier survey at the Office of Technology Assessment found that 17 of 29 insurers would not cover individuals whose tests disclosed they were carriers of a chronic disease.
Knowledge is power, Murphy says. She wants her patients to know as much as possible about their health so they can make the most informed decisions. We need legislation that will not discourage people from getting the information they need.
In response to these fears, many high-risk individuals choose not to be tested. Potential treatment or preventive lifestyle changes may be completely averted. And as fewer people participate in research studies, advancement toward life-saving discoveries may be slowed, even prevented.
While current hereditary cancer studies are spotlighting the Jewish community, this is not a Jewish issue. In fact, it is estimated that every human being carries a small number of mutated cells, which may or may not ever lead to disease.
As scientists race to find genetic markers for diseases, they will study select populations one at a time. And, one at a time, each population may face health-insurance discrimination. Men and women of all ages, all races, all ethnic backgrounds - and all their blood relatives - stand to suffer as they are judged by their genetic inheritance.
There is something we can do to make the course to disease prevention safer for every population. We can support federal legislation to prevent insurance companies from denying, canceling, refusing or ance premiums based on genetic information.
House and Senate versions of genetic nondiscrimination and medical-records privacy bills exist. Each bill addresses one or more of the following: health insurance, life insurance and employment discrimination and issues of medical record privacy.
Rep. Louise Slaughter (D-Rochester) has introduced the Genetic Information Nondiscrimination in Health Insurance Act - which is close to receiving the 218 congressional cosponsors needed to move it to the House floor. Recently endorsed by President Bill Clinton, this bill has wide bipartisan support. If enacted, the Slaughter bill will complement the Kennedy-Kassebaum Health Insurance and Accountability and Portability Act of 1996 that offers scant protection for the self-employed, the uninsured and those employed by companies that do not provide coverage. This legislation will also require written informed consent before an insurer shares genetic information with any third party.
Congressional estimates suggest that tens of millions of Americans remain unprotected against genetic discrimination under the Kennedy-Kassebaum law. In addition to approximately 40 million uninsured Americans, all individuals who lose or consider leaving their jobs, and thus their insurance, benefit from passage of the Slaughter bill.
Genetic science holds the promise of a utopian disease-free future. But, unless we act now, genetic discrimination may hurt millions of Americans and their families on the way to this utopia. In a visionary future, Americans taking medical and genetic tests will not have to hide behind anonymous numbers. Genetic science must advance, not limit, health care for real people with real names.
Copyright 1997, Newsday Inc.