Tuesday, January 8, 2013

Your Genome, Your Data

Susan Young: "Why We Have a Right to Consumer Genetics" (MIT Technology Review, 1/2/2013)

From the article:
Because interpreting the results is so uncertain and the relationship between genetics and disease risk is sometimes weak in the first place, some critics oppose selling these tests directly to consumers. Such sales are restricted in some countries, such as France, and in a few U.S. states, including New York and Maryland.

The American College of Medical Genetics and Genomics’ stance is that the tests should be taken with guidance from an expert who can assess the validity of the results and explain the actions that could be taken in response, says executive director Michael Watson. New studies on the connection between DNA and disease or drug response are published every week. Some of these studies establish a previously unknown link; others may add more weight to a known association; yet others may contradict or disprove what was once thought to be meaningful. “The results of many of these tests are very complex,” says Plon.

Yet this “father knows best” attitude is irksome to many; surely people have a right to such data about themselves, regardless of the complexity and ambiguity of the results. “To tell somebody you don’t have the right to access information about your own biology, for any reason, is pure paternalism,” says Misha Angrist, an assistant professor at the Duke University Institute for Genome Sciences & Policy.

Moreover, most family doctors, and even many specialists, are unfamiliar with genetic tests, and those who’ve been out of medical school for several years may have no training in genomics at all. In many cases, the consumer might well be better informed...