Mary B. Mahowald, John Lantos, Mira Lessick, Robert Moss, Lainie Friedman Ross, Greg Sachs, Marion Verp
Department of Obstetrics and Gynecology and MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL 60637 (http://ccmemac4.bsd.uchicago.edu/CCMEHomePage.html)
"Geneticization" refers to the process by which advances in genetic research are increasingly applicable to all areas of health care.[1] Studies show that primary caregivers are often deficient in their knowledge of genetics and genetic tests, and the ethical, legal, and social implications of this knowledge.[2-6] Accordingly, this project prepares primary caregivers who have no special training in genetics or genetic counseling to deal with the implications of the Human Genome Project for their practice.
Phase I (fall 1995): Generic topics will be addressed by PI and Co-PIs with Robert Wood Johnson clinical scholars and clinical ethics fellows, led by visiting or internal experts.
Topics: Goals, Methods, & Achievements of the HGP; Typology of Genetic Conditions; Scientific, Clinical, Ethical, and Legal Aspects of Gene Therapy; Concepts of Disease; Genetic Disabilities; Gender and Socio-economic Differences; Cultural and Ethnic Differences; Directive or Nondirective genetic counseling. Speakers: Jeff Leiden; Julie Palmer; Dan Brock; Anita Silvers; Abby Lippman; James Bowman; Beth Fine
Phase II (Jan.-Mar., 1996): Teams of individuals, all trained in the same area of primary care, will identify & address issues specific to their area, developing course outlines, bibliography, and methodology based on grand rounds given by national expert.
Primary care area
Genetics expert
Ethics expert
Phase III (Apr,-May, 1996): Policy issues will be identified and addressed as above for all areas of primary care, based on grand rounds given by national expert. Policy team: Genetics expert: Sherman Elias; Ethics expert: John Lantos + trainee
Phase IV (Oct.-Dec. 1996): Presentation of content developed to new group of fellows and scholars by each of the above teams, followed by evaluation & revision.
Phase V (spring, 1997): NATIONAL CONFERENCE and CME/CNE WORKSHOPS for primary caregivers, keynoted by Victor McKusick.
* Supported by a grant from the Director, Office of Energy Research, Office of Health and Environmental Research of the U.S. Department of Energy, under contract DE-FG02-95ER61990.
[1] Lippman A., Prenatal genetic testing and screening, Amer J Law & Med XVII, 15-50 (1991).
[2] Hofman, K.J., Tambor, E.S., Chase, G.A., Geller, G., Faden, R.R., and Holtzman, N.A.,
Physicians' knowledge of genetics and genetic tests, Acad Med 68, 625-32 (1993).
[3] Holtzman, N.A., The paradoxical effect of medical training, J Clin Ethics 2, 24142 (1992).
[4] Forsman, I, Education of nurses in genetics, Amer J of Hum Genetics 552-58, (1988)
[5] Williams, J.D., Pediatric nurse practitioners' knowledge of genetic disease Ped Nursing 9, 1 19-21 (1983).
[6] George, J.B., Genetics: Challenges for nursing education, J Ped Nursing 7, 5-8, (1992).