few years. If the committee's recommended National Advisory Committee on Genetic Testing and a Working Group on Genetic Testing are not created and funded—or are not successful—it will be necessary to reconsider the need for creation of a statutory national commission on genetics with a full legislative mandate negotiated through the Congress.
The committee also sees a particular need for broadly representative advisory bodies at the state level. These advisory bodies should guide state health departments and legislatures on such issues as deciding when tests should be added to state-run screening programs and should ensure that the offering, testing, and associated education and counseling are always conducted in accord with principles outlined in this report. State statutes affecting genetic testing should not be unduly prescriptive or restrictive, and should provide latitude to such advisory bodies to modify state-run genetic testing programs. The committee believes that a federally supported national advisory body with a Working Group on Genetic Testing would be of great help to states in assessing genetic tests, in deciding which tests to adopt, and in tailoring national policy to meet state needs. Some states may not have the necessary expertise or resources to develop their own advisory structure, and may wish to collaborate with neighboring states, or to obtain their advice from the recommended national advisory group.
Much of current genetic testing grew out of and is still conducted within the context of research studies. Research initiatives involving genetic testing are being supported and developed not only within the Human Genome Project, but also within the research programs of various NIH components (including the National Institute of General Medical Sciences; National Institute of Child Health and Human Development; National Cancer Institute; National Heart, Lung, and Blood Institute; National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Neurological Disorders and Stroke, etc.).
In developing and approving research protocols, the committee recommends that the NIH implement the recommendations of this committee within the context of research studies. In particular, the committee recommends that all projects involving genetic testing consider the relevant psychosocial implications of genetic testing, and the potential for harm from the use and misuse of resulting genetic information. This is especially significant where there is no treatment available for the disorders, as will often be the case for many disorders in the near future. In developing requests for proposals or requests for applications, and in reviewing research, demonstration projects, pilot studies, clinical trials, and family studies in genetics, NIH and other funding agencies should also