Thursday, July 22, 2004

Genetic testing and paternalism

A friend points out this New York Times article on genetic testing. The woman in the article, a PhD candidate in genetics, requested prenatal genetic screening for a variety of defects. However, she still gave birth to a deaf son and her child's condition was not diagnosed for weeks. A simple blood test could have told her of the risk. The reason for not including this test in the battery: deafness is "not considered to be 'severe' or 'life-altering.'" This classification is a direct result of the Deaf community's efforts to not have deafness considered a disease.
Other physicians quoted in the article expressed concerns that bringing up genetic testing could make people feel pressured to abort. One said, "I just feel some people are not ready for some of the information."
This sort of paternalism is appalling. Doctors should make patients aware that genetic testing for defects is an option, and if the patients request testing doctors absolutely should not withhold knowledge of the existence of tests for some conditions due to politically correct concerns. Even if you would not abort a defective fetus, the knowledge that your child may or does have a certain condition would allow you to make necessary preparations for care. Just because many genetic tests are not covered by insurance does not mean that patients should be deprived of access to them. For some, it might be worth the peace of mind to spend out of pocket. Doctors have a professional responsibility to be aware of new tests and an ethical responsibility to allow patients to choose for themselves whether they want the assurance such tests can provide - even if that might mean they would make decisions based on those test results that doctors might not agree with.
In a hurry and hopping mad. More later, perhaps.
blog comments powered by Disqus