n be used (e.g., 50) (Table 6).
In these discussions, a distinction has been made between allelic variants that have high penetrance or risk for disease and the more common genetic variants (e.g., blood groups, HLA antigens, variants in drug metabolizing enzymes) that are neither necessary nor sufficient for disease development (50, 53-5). The latter group of genetic variants are risk factors that act in combination with other genes and environmental factors and are often associated with low relative risks for disease; however, in most existing recommendations and guidelines put out by various groups, the distinction between the two types of genetic variation has not been considered, perhaps implying that all genetic testing should be treated the same with respect to potential harm to individuals. Currently, the National Bioethics Advisory Commission, appointed by the President of the United States, has deliberated on genetic research on stored tissue samples (56). As recommendations on informed consent issues are developed by various groups, it is obvious that public health officials and researchers need to work with clinicians, ethicists, social scientists, lawyers, consumers and other groups, and to participate through individual action and through professional organizations, in defining and resolving these issues for public health practice.
III. Education and Training
The rapid expansion of the field of human genetics strains the ability of public health researchers, health practitioners, policy makers, and consumers to keep abreast of new information and its potential ramifications for policy, research and practice; therefore, concerted efforts are needed to provide various audiences, especially public health professionals, with the knowledge and skills they need to integrate genetics into public health activities. This emphasis on training public health professionals is exemplified by ongoing CDC training activities (57) as well as the development of several genetics training programs in various U.S. schools of public health. An overview of such efforts is given in Chapter 29.
There have been other national efforts to address education of professionals in various health disciplines other than public health in genetics. In 1996, the American Medical Association, the American Nurses Association, and the National Human Genome Research Institute formed the National Coalition for Health Professional Education in Genetics (NCHPEG) to promote health professional education and access to information about advances in human genetics (1). NCHPEG is a multidisciplinary group of leaders from more than 100 diverse health professional organizations, consumer and voluntary groups, government agencies, private industry, managed care organizations, and genetics professional societies.
To accelerate training in genetics for public health professionals, the content of existing courses will have to be supplemented by revised curricula or course work For example, training for laboratory personnel will need to cover new genetic tests and reagents and may result in recertification of these professionals. Training modules that address each component of the proposed framework (public health assessment, genetic testing evaluation, intervention, and communication) will need to be incorporated into the training of professionals in various public health disciplines (e.g., epidemiology, biostatistics, behavioral and social sciences, health services research, economics, health policy and management, and environmental health). A minimum level of competence needs to be achieved not only in genetics and disease prevention but in the ethical, legal, and social issues related to it.
Members of the general public will need to be similarly educated to become informed consumers of medical and genetic services and to be aware of potential misuse of genetic information. In addition, incorporating information on genetics into the life science curricula of elementary and secondary schools will help prepare the next generation to be responsive to the challeng