genetics services, for example, (1) social stigma; (2) insurance and employment discrimination; and (3) the organization, delivery, availability, and financing of genetic testing services. This research should address factors such as geographic distribution, cost, and differences in cultural perceptions and values (see Chapters 2, 4, 6, and 8). It might also include research on the meanings and implications of commonly used health terminology, and the changes in application of that terminology to the field of genetics. Important among these issues of the language of genetics are the use of terms such as "defect" versus "condition"; more attention to the functional status of persons with genetic disorders; and assessment of how people consider the "eradication" of genetic disorders versus the eradication of communicable diseases (see Chapter 4, Box 4-1).
The committee recommends research to determine how best to provide genetic counseling in ways that are sensitive and appropriate to a variety of cultures and languages. Such research should be planned, conducted, and evaluated with the participation of persons from the cultures being studied. It should attempt to elucidate the effects of cultural differences on the delivery and receipt of genetic counseling with special attention to differing cultural perspectives on the role of persons in authority when the person is offering genetic counseling. Research should also include the analysis of key issues in genetics of particular importance to various cultures.
Once understood, these analyses should be widely disseminated and used in training, not only throughout the professional genetics community, but also among health care professionals in general. Materials developed for culturally sensitive genetics education and counseling, both print and video, should be evaluated and model materials distributed widely.
The committee recommends the development and evaluation of balanced descriptions of genetic disorders, in culturally appropriate language, that are respectful of persons with the disorder(s) and avoid the use of pejorative terms or language. Appropriate genetics professional groups should undertake the development and evaluation of such descriptions with the participation of individuals and families affected by the disorder, as well as specialized genetics personnel. These descriptions should carefully balance available information about the sensitivity and specificity of the test, as well as about the severity, variability, and treatability, and what is not known about various disorders. The proposed National Advisory Committee and Working Group would be one mechanism for producing such documents. These materials should be evaluated to determine their effectiveness and possible sources of bias in com-