y functioning (40-41). The potential for loss of health, life or disability insurance or other discrimination as a result of genetic testing has also been raised (42). Of equal concern is that genetic tests will be used to identify persons at increased risk of disease before effective measures to reduce their risk are available. In order to formulate sound policy decisions regarding the appropriate use of genetic information in population-based testing programs, a systematic, evidence-based approach should be used to assess the potential benefits and risks of genetic testing.
Since 1968, a list of principles for population-based screening programs have been developed (43) and modified by various groups (e.g., the American College of Medical Genetics (44), and the National Academy of Sciences, ) with respect to genetic screening. More recently, Coughlin et al. have synthesized from the literature emerging elements of a set of principles on the use of genetic information in population-based adult-onset chronic disease prevention programs (46). These principles include (1) assessment of scientific evidence on the relationship between genotype, disease, and genetic test parameters (shown in Table 5); (2) systematic review of the benefits, risks and costs of screening to the target population; (3) a policy development process using consensus conferences, workshops or other approaches to evaluate the appropriateness of population testing; and (4) an evaluation process that should include various measures of access to the testing program as well as impact and effectiveness, including need for revision of testing recommendations based on new scientific evidence.
Thus, an important role of public health will be to develop intervention strategies for diseases with a genetic component, implement pilot demonstration programs and evaluate the impact of interventions on reducing morbidity and mortality in the population. Section IV contains a series of chapters that discuss needs assessment and delivery of genetic services (chapters 14 through 17), application of prevention effectiveness principles to genetics programs (chapter 18), and impact of genetic counseling on public health (chapter 19). Another series of chapters in this section illustrate the process of policy and program development and evaluation in relation to specific disease conditions, including PKU (chapter 20), cystic fibrosis (chapter 21), sickle cell disease (chapter 22), hemochromatosis (chapter 23), and coronary heart disease (chapter 24). Although much of the discussion of genetic services still focuses on traditional genetic programs related to reproductive genetics and child health, an increasing emphasis will be in the next few years on the utility of genetic testing for preventing adult-onset diseases.
IV. Communication and information dissemination
The fourth public health function in genetics is developing and applying communication principles and strategies related to advances in human genetics, the use of genetic tests and services, interventions, and the ethical, legal, and social issues related to these topics. The relevance of advances in human genetics to disease prevention and health promotion needs to be communicated to a large number of audiences, including policy makers, healthcare providers, researchers and the general public (11). Public health agencies can play a crucial role in translating the ever-growing, amount of complex information related to genetics and disease prevention to healthcare providers and communities alike. Early on, the public health community needs to develop a baseline understanding of both professional and consumer perceptions of and attitudes toward the recent developments in and future expectations for human genetics. Because the subject of human genetics can be sensitive, effective communication will be key to the success of public health programs involving genetic research results. Effective communication could be achieved by coalition building among federal agencies, professional organizations, consumers, private in