GTR: Getting a Handle on Genetic Testing

Genetic tests currently are available for approximately 2,500 diseases. Burgeoning testing capability continues to spawn new products and services. The global market for genetic testing reached US$1.5 billion in 2010 is forecast to reach US$4 billion by 2015, according to RCNOS Industry Research Solutions.

Such rapid growth makes it nearly impossible for researchers, physicians and patients to grasp the scope of genetic testing.

In response, the National Institutes of Health launched the Genetic Testing Registry (GTR) on March 1, 2012. Developed by the National Center for Biotechnology Information, this online resource includes a searchable database of data voluntarily submitted by genetic test providers. Information includes the purpose and limitations of each test, what is measured, methods used and the name and location of the test provider. http://www.ncbi.nlm.nih.gov/gtr

Consumers now have an online resource to explore possibilities and receive referral information for the more than 2,700 certified genetic counselors now practicing in the U.S. 

Medical professionals and researchers can find detailed information about tests' analytic and clinical validity, as well as a their ability to predict or improve outcomes. Peer-reviewed, clinical descriptions of more than 500 conditions and links to a depth of other valuable resources also are available.

NIH Director Francis S. Collins said, "This registry will help a lot of people — from health care professionals looking for answers to their patients' diseases to researchers seeking to identify gaps in scientific knowledge."

The GTR is an important baby step in navigating the new world of genetic testing. We have a long way to go in establishing effective regulation and ethical application.

— Tom DeSanto