Stanford Report, May 24, 2006

Q&A: Genetic testing presents risk and opportunity

David Magnus

Medical Center Report asked David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, to address some concerns that bioethicists have with genetic testing and to highlight issues people may wish to discuss with a genetic counselor before undergoing a test. —Amy Adams

Q: Is genetic testing appropriate if doctors don't know the best way to treat people with a positive result?

Magnus: Many patients with diseases that run in their families find it to be a relief whether they have a positive or negative result. It allows them to make plans for the future. Other patients are left feeling guilt and sadness regardless of the results. In general, we leave these decisions for adults to decide for themselves, as long as tests are reliable and valid. It is generally seen as inappropriate to offer testing to children if there is nothing that can be done clinically to help them.

Q: Can insurers use test results to discriminate against customers?

Magnus: Many states have laws that aim to prevent discrimination based on genetic status. In some cases, these laws offer less protection than people realize. That's because many states define their tests so narrowly that the laws don't cover most available genetic tests. Also, insurance companies may pass on to employers the expense of testing and treating people who test positive. If costs become too high, there's nothing to stop an employer from discontinuing coverage.

Q: What if an employer finds out about a positive test?

Magnus: In some cases genetic testing may have some value to an employer—if for example, someone is hypersensitive to a certain metal, they might not want to work at a bike factory that has traces of that metal. However, there is certainly the possibility that employers could exploit genetic information. Why hire someone who won't work as long or be as productive? Most states have laws against genetic discrimination that offer some protection, but these are limited in scope. Likewise, the Americans with Disabilities Act offers limited protection against discrimination.