They also recommended that the ELSI program obtain more input from people affected by genetic disorders, including parents of children with disabilities. Participants suggested that the ELSI program direct educational initiatives to elementary schools, where the curriculum is usually flexible and classes are often characterized by high levels of teacher and student enthusiasm. Two public television series on the impact of genetics on medicine and health are forthcoming, and curriculum development at the high school level has received much attention from the ELSI program. However, participants were concerned about the lack of large-scale educational initiatives for nonstudent populations, nonmedical professionals, and the millions who do not watch public television. Genetic services are available to people who may have little understanding of biology and genetics but who are exposed to symbols of genetic determinism in the media.
Education is a significant component of any informed decision to use genetic services.
Interpreting Genetic Variation. Participants reemphasized the importance of exploring the ethical and social implications of new genetic information about human traits not related to disease. As genetic explanations are elaborated for these traits, new and different kinds of public and professional policy issues will be raised. In the first year, consortium members collaborated to develop educational materials, informed consent documents, and psychological assessment measures, which were critiqued by workshop participants. At issue were the extent to which CF study results could be generalized to other types of disorders and the challenge of obtaining informed consent for carrier testing.