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Assessing Genetic Risks: Implications for Health and Social Policy
information. This imperative also is intended to develop an understanding of the widely varying personal values and cultural perspectives in our society about complex issues related to genetics.
Genetics professionals and qualified educators must assume responsibility for identifying the essential components of genetic literacy. What do we want people to know, value, and do about genetic information? For example, ideally members of the public should know that DNA is the information molecule; they should value the variation and diversity that is expressed from that molecule; and they should be able to participate in public debate about the use of genetic information (J. McInerney, personal communication, 1993). However, the public also needs to understand the interaction and interdependence of genes, the individual, and the environment. Perhaps the most important contribution of new knowledge about genetics is its ability to document a major biological basis for human variation. The old argument about nature versus nurture is outdated; as discussed throughout this report, both nature (genes) and nurture (environment) are important to human health. Broad public understanding of the potential and limits of genetics is essential to avoid genetic reductionism (Holtzman, 1989; Keller, 1992). This is a "tall" order indeed; even many well-educated people lack understanding of these concepts. Nevertheless, the increasing impact of genetic decision making in health and disease makes it important to educate the public in these matters.
Much of the responsibility for genetics education must fall to two components of the public education system: formal education, which takes place in the schools; and informal education, which includes educational interventions outside of school. Public education has long been viewed as a key enabler of democratic pluralism, providing individuals with access to elements of cultural, political, and scientific literacy. Understanding the basis of genetics—variability and evolution—reinforces this democratic pluralism with values of personal autonomy, kinship, and respect for variation, thereby helping to decrease artificial social divisions.
This conclusion has been echoed twice in the last two decades. In 1975 the National Academy of Sciences (NAS) Committee on Inborn Errors of Metabolism recommended (NAS, 1975):
It is essential to begin the study of human biology, including genetics and probability, in primary school, continuing with a more health-related program in secondary school.... Sufficient knowledge of genetics, probability, and medicine leading to appropriate perceptions of susceptibility to and seriousness of genetic disease and of carrier status cannot be acquired as a consequence of incidental, accidental, or haphazard learning....
These health education precepts (including media coverage and personal counseling) have been utilized with some success in other areas of mass public health education such as cardiac risk reduction (Farquhar, 1992). In 1983, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research reaffirmed the importance of public education about genetics (President's Commission, 1983):