Despite remarkable progress, much remains unknown about the risks and benefits of
genetic testing. No effective interventions are yet available to improve the outcome of most
inherited diseases; negative test results might not rule out future occurrence of disease, and
positive test results do not necessarily mean the disease will inevitably develop. In view of
this uncertainty, the Working Group on Ethical, Legal, and Social Implications of Human
Genome Research at the National Institutes of Health and Department of Energy created the …

Abstract The Task Force on Genetic Testing was created to review genetic testing in the
United States and, when necessary, to make recommendations to ensure the development
of safe and effective genetic tests. A survey to explore the state of genetic testing was
undertaken for the Task Force and completed in early 1995. The survey, as well as literature
reports and other information collected for the Task Force, showed problems affecting safety
and effectiveness, as defined by the Task Force: validity and utility of predictive tests …