OREGON STATE UNIVERSITY

Human Genome Project Raises Ethical Questions About Genetic Screening

09/11/1996

CORVALLIS - There is a new genetic test for hereditary breast cancer that can reveal the mutation of a key gene which indicates an 80 percent chance that a woman will develop breast cancer some time in her life.

Now the question is: Should women take the test?

Science and ethics are meeting once again at a crossroads that experts say may develop into one of the most controversial issues of the 21st century.

The issue is genetic screening, says Courtney Campbell, an Oregon State University research who is presenting a paper on the topic at The Human Genome Conference Sept. 26-28 in Tuskegee, Ala.

"This is one of the first and most important ethical, legal and moral cases arising from the Human Genome Project," said Courtney Campbell, director of OSU's Program for Ethics, Science and the Environment. "Genetic research is providing a lot of new information. Now the question is, what to do with it."

Women with a family history of breast cancer may have their DNA tested to see if chromosome 17 - also known as the BRACA1 gene - has a telltale mutation. indicating an individual has a four-out-of-five chance of getting breast cancer at some time during her life.

The test does not say whether individuals will get breast cancer, Campbell pointed out - only that they are in the "80 percent category."

Many women say they won't take the test, according to Campbell, because positive test results would "alter their life plans." And with no current symptoms, and no potential therapy if symptoms develop, they feel knowing those results would be more harmful that useful.

Other women are taking the test and initiating a series of proactive measures, from changes in diet, to more regular checkups, to preventive double mastectomies.

"There is a real ambivalence among women about genetic screening for breast cancer," Campbell said. "Some women like to have as much information as possible to help them make decisions. Others feel this is a sort of Damocle's Sword hanging over them."

Campbell said there are additional ethical implications to the development of DNA research, including whether to share test results with female siblings and other family members.

"If you test positive, should you encourage family members to go in for testing, or would that be imposing your lifestyle and sense of values upon them?" Campbell said. "There are a lot of ethical questions individuals must face."

Confidentiality of test results is a major concern for ethicists, said Campbell, who is an associate professor in OSU's Department of Philosophy.

"There are real questions about whether this information can be contained within the doctor-patient relationship," Campbell said. "Potentially, there are a lot of people who would benefit from that information, from insurance companies to prospective employers.

"The potential for genetic discrimination is a significant worry for a lot of people," he added.

Campbell said an average of 40,000 women die from breast cancer every year in the United States and there is a one in nine chance that a woman will develop the disease at some time in her life.

Family history of breast cancer can significantly increase a woman's chances of contracting the disease and now these new testing protocols can further help determine an individual's susceptibility.

However, Campbell said there is a concern among the medical community that over-the-counter testing - which may be available as early as this December - will keep physicians out of the loop.

"When the biotech companies market these kinds of tests over the counter, people lose the counseling component of doctor-patient relationships," he said. "And when you're talking about life-and-death decisions, that loss isn't something to take lightly."