Testing for genetic susceptibility: What you see is not what you get

Abstract

Media reports of advances in human genetic research often make exaggerated claims and generate expectations of practical benefits, particularly the imminence of genetic testing. After the discovery of a disease‐related gene, which attracts media attention, additional research is needed to demonstrate the safety and effectiveness of genetic tests. Even more work is needed to develop interventions to prevent or reduce the burden of genetic disease and to demonstrate their safety and effectiveness. Clinical laboratories sometimes offer genetic tests before the tests, or ensuing interventions, have been adequately assessed. Exaggerated reporting is not entirely the fault of the mass media; research institutions and scientists themselves contribute. The need to justify scientific research by exaggerating its effects has increased in recent years as government funding for research (in the U.S.) has become problematic and universities turn to the private sector. If the exaggerations continue unchecked, and if unvalidated tests reach the public, a backlash against science could result. More critical reporting by the media and university public relations offices, more stringent oversight of genetic test development and delivery, and greater awareness of the benefits and risks of tests by health care providers can reduce the problem.