We describe a novel approach for teaching ethical, legal and social issues (ELSI) and the scientific principles of the Human Genome Project (HGP) through the development of a World-Wide Web (WWW) document, the ELSI Electronic Case Book. The focus of the case book will be genetic counseling. Its intent is to introduce primary care physicians and nonphysician providers to their future role as facilitator of the genetic counseling process. This is a pilot study to test the efficacy of using Web documents for self-directed learning. The pilot will be conducted in the Family Medicine Residency and Physician Assistant Programs at Baylor, and with clinicians on the staff of several of the Baylor-affiliated community-based clinics. Achievement, self-efficacy and qualitative methods will be used to evaluate its merits and drawbacks. This project has three general outcomes: (1) as a short-term intervention in medical genetics, genetic counseling, the HGP and ELSI; (2) as a training session to increase literacy in Internet and Web navigation which will, in general, be useful for professional growth; (3) as an approach toward centralizing existing resources (text and video) meeting the various educational goals of genetic counseling. Our purpose as an educational intervention is: (1) to improve knowledge of and attitudes toward genetics and genetic counseling through cases based on familial breast cancer susceptibility and sickle cell disease (chosen for their relevance to primary care); and (2) to heighten awareness of ELSI and HGP advances, with special attention to ethnocultural barriers to care, in addition to others. As a general professional growth experience, this project also trains students, residents and clinicians-in-practice in the art and utility of Web navigation for personal and professional uses. As an educational resource activity, the project plan includes the collection of many educational modules on medical genetics and genetic counseling. This collection, the Core Resource, will be made widely accessible through the Internet, as plain text and hypertext documents. Finally, through formal information modeling methods (construction of well-documented concept maps of the subject matter, Core Resource materials and case scenarios), we provide a re-usable and expandable architecture for future case authors. We have developed a preventive ethics genetics work-up device for case analysis. An Advisory Committee of nationally-recognized ELSI and content experts will guide the Case Book's goals and content.
