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.
A Hispanic Educational Program for Scientific, Ethical, Legal and Social Aspects of the Human Genome Project
Margaret C. Jefferson and Mary Ann Sesma
Department of Biology & Microbiology; California State University, Los Angeles; 5151 State University Drive; Los Angeles, California 90032 and Corresponding author; Los Angeles Unified School District; 1621 Sunnyhill Drive; Monterey Park, CA 91754
This project is a multidisciplinary, bilingual (Spanish-English) educational program about the Human Genome Project (HGP) and related ethical, legal and social issues (ELSI). The target population is the bilingual Hispanic within the Los Angeles Unified School District, who represents 65% of an approximately 850,000 pre-school to adult enrollment, and their teachers and parents. The major focus is to develop culturally competent, linguistically appropriate, and relevant curriculum that leads to Hispanic student and family interactions.
The current students in the local school population and their parents demonstrate little knowledge of HGP-ELSI when pre-tests were given to these students or when small focus groups of parents met. The basic curriculum to be developed consists of the full text translation into Spanish of existing BSCS HGP curriculum plus supplemental materials for students and parents that focus on the genetics of New World Hispanics and HGP-ELSI. A major goal is to open up a channel of familial dialogue between parents and their students about HGP-ELSI, and to develop linkages for access to health and educational services for individuals seeking assistance. Other activities include the development of assessment criteria for both parent and student curriculum components; development of a tracking system to measure student progress; pretesting the curriculum prior to start of academic year; implementation and testing of curriculum at Bell High School (a year round, four year high school with over 4,000 students, 93% Hispanic) with followup modification; dissemination, implementation and testing of curriculum at four additional, predominantly Hispanic high schools; and national dissemination of project objectives and outcomes.
Family progress will be measured by attendance at an annual conference of students, parents, and teachers at California State University, Los Angeles. Two aspects of this conference are of major importance: (1) parent involvement in the educational experiences of their children and (2) display of student work at the conference for positive reinforcement. Throughout the academic school year, teams of students will produce weekly projects related to the science / ELSI concepts they are learning in the classroom which will be displayed at the annual conference. In addition, students will prepare one page newsletters to take home each week for discussion with their parents. This project will be closely linked with several other programs, such as Healthy Start (California Senate Bill 620). This linkage provides opportunities to develop communication systems that are appropriate to the Hispanic population of students and parents.
This work is funded by the DOE HGP-ELSI program (DE-FG03-94ER61797 A000, M. C. Jefferson and M.A. Sesma are co-P.I.).