Screening poses many difficult questions - moral and ethical controversy over genetic screening for hereditary diseases - Brief Article

USA Today (Society for the Advancement of Education), August, 1997

A genetic test for hereditary breast cancer can reveal the mutation of a key gene which indicates an 80% chance that a woman will develop breast cancer some time in her life. The question is: Should women take the test?

Genetic screening may develop into one of the most controversial issues of the 21st century "This is one of the first and most important ethical, legal, and moral cases arising from the Human Genome Project," explains Courtney Campbell, director of the Program for Ethics, Science, and the Environment, Oregon State University, Corvallis. "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 know as the BRCA1 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 points out -- only that they are in the "80% category."

Many women say they won't take the test because positive results would "alter their life plans." With no current symptoms and no potential therapy it symptoms develop, they feel knowing the results would be more harmful than useful. Others are taking the test and initiating a series of proactive measures, from changes in diet to more regular checkups to preventive double mastectomies.

Campbell points out that 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? There are a lot of ethical questions individuals must face."

Confidentiality of test results is a major concern for ethicists. "There are real questions about whether this information can be contained within the doctor-patient relationship. 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."

Moreover, there is concern among the medical community that over-the-counter testing 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. And when you're talking about life-and-death decisions, that loss isn't something to take lightly."