A Survey of Genetic Counseling Professionals in the Southeastern United States: Actual Versus Perceived Roles, James Delores

This study was part of an Ethical, Legal, and Social Implications of the Human Genome Project (ELSI) grant funded by the Department of Energy (DOE) and the National Institutes of Health (NIH) . It was conducted under the aegis of the Morehouse School of Medicine in Atlanta, Georgia, and the University of Florida College of Medicine in Gainesville, Florida. As part of the project, the current study sought to answer the following questions: 1) What are the qualifications and training of professionals in the southeastern United States who provide genetic counseling? 2) Who routinely does and who should do genetic counseling? and 3) What are the educational methods used by the different health professionals in genetic counseling? A self-administered mail survey was sent to 325 potential genetic counseling professionals in the southeastern United States (Alabama, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee) . Two hundred four persons volunteered for the study. Genetic associates (31%), physicians (30%), and nurses represent the three largest groups of health professionals involved in the genetic counseling process. Genetic counseling is usually a team activity. The majority of respondents reported that social workers are not and should not routinely be involved in genetic counseling. Genetic associates are well trained in human genetics and counseling techniques, but like physicians and nurses have much room for improvement in the educative aspect of counseling. Physicians have more years of experience (13 years) doing genetic counseling than genetic associates (6 years) and nurses (6 years) but the bulk of their training apparently comes from supervised clinical training rather than formal courses in human genetics, counseling techniques, and educational methods and principles.

Nurses and genetic associates have comprable years of experience but nurses lack the formal courses in human genetics and counseling techniques. The majority of all respondents had no formal training in educational methods and principles. Educational techniques such as assessing clients educational level and asking patients to repeat information in their own words were not always utilized. Recognizing professional limitations and formal training in human genetics are the only two factors perceived to increase counseling effectiveness. Policy recommendations are given.