Many fear no privacy after genetic testing

Advances in genetic testing sound like a good idea for most consumers, but the availability of such tests is creating an overwhelming sense of anxiety. A recent survey of New York state residents found that 90% worry that genetic test results could be divulged to outside parties, such as employers and health insurance companies.

A vast majority, however, said they would undergo tests to determine their risk of disease. For example, 69% reported they would take a test to determine their risk of treatable diseases such as cancer and heart disease. A smaller group (59% of those surveyed) said they would undergo a test for diseases with no effective treatment, such as Alzheimer’s disease.

A loss of medical insurance based on the results of genetic testing still is a possibility for some people, says Francis Collins, MD, director for the Human Genome Project in Bethesda, MD. While announcing the early completion of the Human Genome Project, Collins called for the need for federal legislation to prevent such scenarios from happening.