The committee also sees a need for broadly representative advisory bodies at the state level (see Chapters 1 and 9). These advisory bodies should be guided by the principles outlined in this report. They should guide state health departments and legislatures on such issues as when tests should be added to state-run screening programs and how to ensure that the offering, testing, and associated education and counseling are conducted in accord with the 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.
Much of current genetic testing grew out of the context of research studies, and some genetic testing is still being done in research settings. 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 components of the National Institutes of Health (including the National Institute of General Medical Sciences, National Cancer Institute, National Heart, Lung, and Blood Institute, National Institute of Child Health and Human Development, National Institute of Diabetes and Digestive and Kidney Diseases) and the Human Genome Program of the Department of Energy. In developing and approving research protocols, the committee recommends that the NIH and the DOE consider the recommendations of this committee within the context of their research programs, including study of the psychosocial issues and implications of genetic testing and the potential for harm from the use and misuse of genetic information. This is especially significant where there is no treatment available for the disorders, as will often be the case in the near future. In developing requests for proposals and requests for applications and in reviewing research, demonstration projects, pilot studies, clinical trials, and family studies in genetics, funding agencies should pay particular attention to psychosocial issues and should assess the availability of appropriate genetic counseling and follow-up services as elements of study design.
The committee identified several areas for which additional standards were needed concerning who should be tested, for what disorders, and at what age. While existing standards may have been adequate for the past, new standards must be developed in response to rapid developments in genetic testing methods that are now experimental. In particular, additional standards are needed for prenatal diagnosis, predispositional testing, and multiplex testing (see Chapter 9). Research and policy analysis is needed in prenatal genetic diagnosis to address problems such as the complexities of identifying fetal cells in maternal blood, maternal serum alpha-fetoprotein screening, notions of ''perfect-