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.
The Human Genome Project: Information Management, Access, and Regulation
Development of Educational Materials for High School Biology
(Grant No. DE-FG03-93ER61584)
Joseph D. McInerney and Lynda B. Micikas, Biological Sciences Curriculum Study (BSCS)
Informatics is a central, but sometimes overlooked, aspect of the Human Genome Project (HGP). Management of the vast amounts of data generated by the HGP presents technological and logistical challenges to those who require access to those data. In addition, the electronic storage of genomic information raises important questions of ethics and public policy, many revolving around privacy and confidentiality.
BSCS has addressed the scientific, technological, ethical, and policy aspects of genome informatics in an instructional program titled The Human Genome Project: Information Management, Access, and Regulation. The program, intended for use in introductory high school biology, includes a 125-page print module and software. The print materials provide approximately 50 pages of background material for teachers and seven days of classroom instruction. The software includes two model databases: a research database that contains anonymous data (map data, sequence data, and biological/clinical information) and a registry that attaches names (three kindreds, 52 individuals) to genomic data. The students manipulate the databases as they work through the classroom inquiries.
BSCS used the development process that it has refined continually since the inception of the organization in 1958. The materials were designed and written by experts in human and medical genetics, molecular biology, informatics, ethics, public policy, and classroom teaching. The education committees of the American Society of Human Genetics, Council of Regional Networks of Genetic Services, and the National Society of Genetic Counselors reviewed the conceptual framework for the program and the field-test materials. BSCS field tested the program with 1,000 students in high schools across America. Following final revision based on the field-test data and external reviews, BSCS will distribute the print materials and software free of charge to all 50,000 high school biology teachers in the United States.