Genetic screening: Should the government stay out?

Yesterday’s Science section of The New York Times included an intriguing article by columnist John Tierney on whether the government has a proper role in regulating commercial sales of DNA analysis tests to the general public. New York State has already banned the direct sale of these tests.

Tierney reports on a New England Journal of Medicine study of more than 2,000 people who paid a discounted price of $225 out of pocket for a genome-wide scan by the Navigenics company. A perhaps surprising finding of the study was that few of those who ordered the exams altered their lifestyle much in response to reports on their prospective risks for serious diseases like heart disease, cancer and diabetes, even when told these steps might lower some of their risks. Nor had the results greatly changed their anxiety levels.

One of the few observable results was a meaningful increase in the reported intent among the purchasers to undergo diagnostic screenings for conditions like colon cancer.

ACSH's Dr. Elizabeth Whelan says, “As someone who believes that government edicts and medical practice do not go well together, I feel uncomfortable objecting to the availability of these tests.”

Commenting on the possibility of further government regulation, ACSH's Dr. Gilbert Ross remarks, “There are few diseases which genetic tests can predict with certainty, as they can for example for sickle-cell anemia. What if a test indicated that a person might get Alzheimer’s in ten years, and he was planning to wait ten years to retire and then take a trip around the world? Wouldn't that be relevant? My genotype is my own. It comes from my parents — on what basis should the State of New York prevent me from getting this information?

As former ACSH Trustee and Princeton Professor Lee Silver said, “It seems like a no-brainer that any competent adult should be free to purchase an analysis of their own DNA as long as they have been informed in advance of what could potentially be revealed in the analysis. You should have access to information about your own genome without a permission slip from your doctor.”