PUBLIC AND PROFESSIONAL EDUCATION

"Education Priority Setting Meeting"
Meeting held April 21, 1995 on the NIH campus in Bethesda, Md.

This meeting was held to review ELSI education projects and identify education priorities for the ELSI Program. The meeting was chaired by Joseph McInerney, Director of BSCS, who set the stage for the meeting by asking the assembled group what is it that ELSI wants people to know, value and do. The meeting was attended by a number of experts on ELSI including: GESTEC Directors, ELSI Working Group members, reviewers of ELSI education applications, a curriculum specialist, NCHGR staff members, and staff from other NIH offices and institutes. The group concluded that while both public and professional education were important, ELSI's highest priority area at this time should be in the area of health professional education, particularly primary care providers. The reason for this conclusion was that genetic technologies are increasingly becoming available for use in primary care settings and practicing health professionals are ill-equipped to provide these services.

"NCHGR Education Committee"

The NCHGR has formed a Center-wide Education Committee to share information about educational activities sponsored by or of interest to the Genome community. The Committee also provides some coordination of ongoing genetics education activities, both within NCHGR and with other agencies, and stimulates the development of new education efforts in identified priority areas (e.g. health professional education in genetics). The committee is composed of NCHGR intramural and extramural staff who are involved in genetic education activities. Meetings are held on a monthly basis.

The National Coalition for Health Professional Education in Genetics

Catalyzed in 1996 by the American Medical Association, the American Nurses Association, and NHGRI, the National Coalition for Health Professional Education in Genetics (NCHPEG) is an effort to provide an organized, systematic, and national approach to genetics education for all health care professionals. NCHPEG serves as a forum for the exchange of information, the creation and sharing of genetics education resources, and the consolidation of commitment among health care professional leaders to the urgent need for education in genetics. NCHPEG members are leaders from approximately 100 diverse health care professional organizations, consumer and voluntary groups, government agencies, private industry, and genetics professional societies. The first full meeting of the Coalition took place on March 10, 1997. Interdisciplinary working groups have been established to address the following priorities: 1) development of a comprehensive, WWW-based genetics information center; 2) identification of a set of core competencies in genetics that ALL health care professionals should have; 3)development of a core curriculum in genetics to serve as a template which can be modified according to discipline; and 4) integration of genetics content and questions into continuing education programs, certification and licensure examinations. A Family History Tool working group will be established in the near future to develop a model for eliciting a comprehensive, multigenerational family history. Additional working groups will be created to address new NCHPEG priority areas as they are identified and agreed upon by members. An interactive website has recently been created to provide basic information on NCHPEG (its members, meetings, and activities), to facilitate communication between members, and to serve as the nucleus for the WWW-based genetics information center.



"Bioethics Education Materials and Resources Subcommittee (BEMARS)"
October 1997 (Inter-Agency Committee. Chaired by ELSI)

In May 1996, the President formally apologized to the survivors and relatives of the nearly 400 impoverished African-American men who were left untreated for syphilis while participating in a Public Health Service research study generally known as the Tuskegee Syphilis Study. In response to this study, the Secretary for Health and Human Services initiated a number of steps to ensure and demonstrate the Department's commitment to the highest ethical principles in the conduct of research involving human subjects. One of these activities was the formation, in October 1997, of an HHS inter-agency committee to develop materials for bioethics courses and related training materials to enable research institutions to strengthen their efforts in bioethics training as it relates to research involving human subjects. This group is now in the process of developing a series of bibliographies cataloging and annotating existing resources. These bibliographies will be made available in both print and electronic formats.



"Genetic Medicine-Primary Care Faculty Development Program."
Interagency Agreement with the Health Resources and Services Administration (HRSA)

The overall purpose of this project is to provide faculty development in genetic medicine for Family Practice, Pediatric and Internal Medicine physician faculty who teach primary care medicine to medical students and/or residents in ambulatory community-based settings. This project will prepare academic faculty and their community colleagues with the knowledge, skills, and attitudes essential to teaching and integrating genetic medicine into primary care as demonstrated through concepts that relate to ambulatory care, continuity care, evidence-based medicine, prevention, and the ethical, legal, and psychosocial aspects of the practice of primary care in the ambulatory community based setting.



"Mentored Scientist Development Award (K01) and Short-Term Courses (T15) in Research Ethics" (Interagency Bioethics Training Initiative)

As part of the Tuskegee Bioethics Initiative, the NIH, CDC, HRSA and AHCPR have developed two new program announcements to support training in research ethics. The Mentored Scientist Development Award (K01) supports training for health professionals working at academic and other health-related institutions in biomedical, behavioral, or public health research, particularly research involving human participants. The Short-Term Courses in Research Ethics (T15) program supports grants to develop, conduct, and evaluate short-term courses on ethical issues in research, particularly those involving human participants. These courses should improve the skills of biomedical, behavioral, social science, and public health researchers in identifying and addressing the ethical, legal, and social implications of their research, especially when human subjects are involved.