Introduction to the Workshop
URLs Provided by Attendees
- Ethical, Legal, and Social Issues
The electronic form of this document may be cited in the following style:
Human Genome Program, U.S. Department of Energy, DOE Human Genome Program Contractor-Grantee Workshop IV, 1994.
Abstracts scanned from text submitted for November 1994 DOE Human Genome Program Contractor-Grantee Workshop. Inaccuracies have not been corrected.
Impact of Human Genome-Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical and Legal Issues.
Ralph W. Trottier, Lee A. Crandall, Faye Cobb Hodgin, Mwalimu Imara, Ray Moseley, and David Phoenix
Morehouse School of Medicine, Atlanta, Georgia, University of Illinois, Champagne, Illinois, University of Florida, Gainesville, Florida, Clemson University, Clemson, South Carolina
The primary focus of this research involves a detailed analysis comparing and contrasting genetic services programs and delivery systems in the states of Georgia and Florida. Description of findings include a profile of personnel and their responsibilities as functionaries in the delivery of public sector genetic services. An important basic issue considered in this study and which must be addressed through research in a more global context involves the extent of awareness of the potential impact anticipated to result from Human Genome Project research and the degree to which public sector programs are preparing to incorporate, in an equitable and just way, new technological advances in genetic diagnostics and treatment.
The project is conducted through on-site interviews and correspondence with key professionals involved in genetic out-reach service programs. Data and information collected form the fabric of a rich description regarding geographic, organizational and social perspectives of public sector genetics. Newborn screening (NBS) legislation was analyzed in detail to determine whether there is a clear and currently relevant intent and purpose in fulfilling expressed state's interests, whether provisions to educate the public are included, the extent to which privacy (confidentiality-protecting) safeguards have been included, and how service provision is documented and monitored. Administration of genetic services delivery systems was examined from organizational and operational viewpoints. On-site field research provided the opportunity to gain firsthand understanding of operational functions with respect to population demographics on a regional basis, roles of key personnel at the health district/subdistrict level and identification of potential gaps in delivery of and access to services. Leading roles of academically-based tertiary care centers in both states are compared and contrasted.
Early Intervention Programs (EIP) resulting from the Education for the Handicapped Act Amendments of 1986 are now in early stages of implementation. The EIP approach involves multi-agency and family interactions in forming and evaluating goals and objectives designed to facilitate a smooth transition of developmentally delayed children into their school years. The Georgia and Florida EIP were analyzed to determine the extent to which they interact with genetic services in the public sector. Research identifying genetic factors in learning disabilities and causes of mental retardation will be of keen interest to EIP. Whether EIP will lead to setting new standards for incorporating additional NBS tests (e.g., for fragile X) remains to be determined but would appear to be a reasonable possibility. Recommendations for future ELSI research in defining standards for public sector genetic services delivery and policy options conclude this presentation.
This research is funded by DOE/NIH co-sponsorship under the administration of the DOE Genome Program, Grant #DE-FG0292ER61396, Ralph W. Trottier, P.I., Lee A. Crandall, Co-P.I.