Gene Testing: Separating Hype from Reality

The National Institute of Health announced a plan to create the first Genetic Testing Registry by 2011. The registry will be a public database that can be accessed by consumers and health care providers.

According to the NIH, more than 1600 genetic tests are now available, but consumers don't have access to a public database that explains what they do and how to find laboratories that offer them. The database will encourage "genomic data-sharing and research for scientific discoveries" and "will help consumers and health care providers determine the best options for genetic testing, which is becoming more and more common and accessible," said NIH Director Francis S. Collins, M.D., Ph.D.

This is good news for companies selling new genetic tests like Counsyl, which I wrote about a few weeks ago. But it's still important for companies to market tests that actually mean something to their customers -- rather than just trying to make money off of the latest genetic hype. It's a known fact that genes are not necessarily destiny, so it's important that companies don't oversell false promises about what these tests can actually do. For example, any company selling a test for mental illness should be taken with a grain of salt, since no specific gene has yet been linked to bipolar disorder or schizophrenia. And this week, a new study published in The New England Journal of Medicine found that the addition of genetic information only modestly improved assessment in an analysis of 5600 cases of breast cancer.

A 2005 study published in The Journal of Health Education and Behavior by researchers at University of Washington's School of Public Health and Community Medicine found that "the general public holds high opinion of genetic testing and that current media outlets for public education are not adequate to increase accurate knowledge of genetic testing." The author argue that "more regulation is needed to control and correct this problem in the United States.

In the Washington Post, Collins offers a good overview of where the field stands and a prediction of the paradigm for the future:

The decision to start a national database, and an increased focus by the government on advancing genetic science is an important step forward for public education and better regulation of the business of genetics.

Image: Wikipedia Commons