Progress, and Applications
of the Human Genome Project
Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, May-June 1995; 7(1)
The increasing abilities to manipulate and analyze DNA are bringing profound changes to society, particularly in approaches to human health problems, personal identification, and agricultural development. To reap the benefits and avoid pitfalls inherent in DNA technology, the general public must have some understanding of DNA, how it is involved in heredity, and how it works in the cell, as well as the methods used to analyze and manipulate it. With complex genetic concepts and discoveries coming at an ever-increasing pace, what the lay person understands or believes to be true now will help determine how such scientific advances are evaluated and whether they are accepted by the public or not. Clearly, education is the key.
Education in the United States faces a number of challenges in promoting science literacy for the public, students, and teachers. Some public high schools do not even offer a biology course, and most high school and many college science teachers received their degrees before DNA technology was added to the college curriculum. Confident, enthusiastic, and knowledgeable teachers are desperately needed at all levels to convey the latest information on genetics and molecular biology to the first generation that will be influenced by the new genetics and the technologies springing from it.
One of the most efficient ways to foster productive interactions and update educators is to provide them with short courses and workshops in molecular genetics. Several educational programs sponsored by the Human Genome Project have developed effective, field-tested workshops for just this purpose. In addition, many scientists in public and private institutions serve as resources for the general community and help teachers understand molecular genetics and obtain necessary equipment, supplies, and know-how to incorporate genome technology into everyday classroom teaching.
This is a significant beginning, but much more needs to be done by investigators involved in genetics. The types of outreach described in the following article could serve as models for other education activities.
The following article, which is not comprehensive, highlights some outreach efforts to meet the critical need for genetic education throughout the population. Education projects of the NIH National Center for Human Genome Research (NCHGR) and the Ethical, Legal, and Social Issues (ELSI) Programs of NIH and DOE are listed first. These projects are followed by activities at the research centers, colleges, universities, and state departments of education; and programs affiliated with corporations and private industry.
Office of Communications, Leslie Fink (301/402-0911, Fax: -2218 or -4570, LeslieF@od.nchgr.nih.gov): Prepares reports, publications, and press releases and responds to inquiries about NCHGR research programs and policies; collaborates with professional, community, and other organizations to develop avenues for dialogue and dissemination of information about the Human Genome Project and other NCHGR programs (see NCHGR Publishes Brochure, Progress Report, for recent publications).
Genetics Education Office, Paula Gregory (301/594-0654, Fax: /402-2218, email@example.com): Lectures to teachers, students, physicians, and community groups. Placement of students and interns in Division of Intramural Research laboratories. DNA sequencing partnership involving human genome sequencing by high school students (modeled on University of Washington project). Workshops and short courses for counselors, science writers, teachers of deaf students, and minority faculty. Newsletters, such as Genome, for educators and directors of genetics education programs. Training sessions and educational resources for scientists. NCHGR WWW Home Page (http://www.genome.gov/) extension to include information on activities of the education office.
Elizabeth Thomson, Acting Chief, NCHGR ELSI Branch (301/402-4997, Fax: -1950, firstname.lastname@example.org)
Foundation for Blood Research, Paula Haddow: Existing high school biology curriculum unit revised to include societal implications of genetic advances. Field test of new materials and pilot test of an experimental theater component.
Georgetown University (GU), Virginia Lapham: Human Genome Program Education Model Project to develop programs for training individuals, family members of 90 voluntary support groups, and related multidisciplinary health professionals to educate others.
GU, LeRoy Walters: Further development of a database of ELSI literature in the Bioethicsline online bibliography (email@example.com or 800/633-ethx). Portions of ScopeNotes and Bibliography of Bioethics from the GU Kennedy Institute of Ethics available through National Center for Genome Resources Home Page (http://www.ncgr.org).
University of Virginia, John Fletcher: Integrated textbook, case book, teaching manual, and workshops on genetic evidence for appellate judges and journalists.
Massachusetts Corporation for Educational TV, Cardie Texter: Semester-long course through a public broadcasting network using satellite, computer, audio, and print materials.
High school biology students sequence human cosmid DNAs in a University of Washington, Seattle, project.
University of Washington, Seattle (UWS), Albert Jonsen: Five-day, advanced-level course on ethical and social implications for doctoral and postdoctoral students and professionals trained in bioethics and genetics.
Other education efforts by the NCHGR ELSI component include the following: 1993 meeting of directors of counselor and nurse-specialist training programs to develop new recommendations for training genetic counselors. Programs to recruit talented nonbiologists into the Human Genome Project and disseminate information to scientists about the uses of new genomic tools. Short courses about genomic sciences for the general scientific and ELSI communities.
DOE ELSI Program: Daniel Drell (301/903-6488, Fax: -8521, Daniel.Drell@mailgw.er.doe.gov)
American Association for the Advancement of Science, Maria Sosa: Booklets and a database of health and science resources on genetics for adults in basic literacy classes.
American Society for Human Genetics, Stephen Goodman: Five-year program giving one fellowship each year to a mid-career geneticist for working on Capitol Hill.
Biological Sciences Curriculum Study (BSCS), Joe McInerney: Curriculum units for 55,000 high school biology teachers and students, focusing on human genome mapping and sequencing; information management, access, and regulation; and nontraditional forms of inheritance.
California State University, Margaret Jefferson, and Los Angeles Unified School District, Mary Ann Sesma: BSCS module translated into Spanish and adapted for introduction into public schools and the Hispanic community.
Cold Spring Harbor Laboratory, Jan Witkowski: Workshops on human genetics for policymakers and opinion leaders.
Einstein Institute, Franklin Zweig: Deskbook for federal and state courts to assist judges in comprehending and applying genetic evidence.
Exploratorium visitors experiment with the protein production line at the "Diving into the Gene Pool" exhibition.
Exploratorium, San Francisco, Charles Carlson (firstname.lastname@example.org): Museum exhibits, including "Diving into the Gene Pool," an extensive hands-on, 25-exhibit display examining DNA structure and function and the Human Genome Project from a variety of perspectives (open through September 4).
Science and Technology Radio Project, Barinetta Scott: Two-year project to produce over 17 hours of radio programs and printed and electronic materials on science and ethical issues of the genome project.
University of Chicago, Mary Mahowald: Training for physicians and nurses who will educate practitioners introducing new genetic services.
University of Kansas, Debra Collins: Series of educational workshops held each summer for about 50 high school science teachers (url no longer available).
UWS, Maynard Olson, Leroy Hood, and Maureen Munn: Pilot program allowing high school biology students to sequence human cosmid DNAs and place them in sequence databases.
WGBH Educational Foundation, Paula Apsell and Graham Chedd (Chedd-Angier Productions): "The Secret of Life";WNET/Thirteen, George Page and Stefan Moore: "Medicine at the Crossroads," partially supported by NCHGR. TV documentaries broadcast several times, some available on videotape. ["Secret of Life": Films for the Humanities & Sciences; Princeton, N.J. (800/257-5126, Fax: 609/275-3767)]
Oregon Public Broadcasting and Graham Chedd: TV documentary on ELSI issues, "Genetics in Society," planned for release in 1997.
Human Genome Management Information System (HGMIS), Betty Mansfield (Fax: 615/574-9888, email@example.com): Human Genome News, cosponsored by NCHGR and DOE, and DOE Human Genome Program Primer on Molecular Genetics distributed to more than 30,000 high school, college, and medical educators; accessible through WWW (http://www.ornl.gov/hgmis/home.shtml). HGMIS staff answer questions from scientists and teachers and put them in touch with others and with educational organizations and consumer groups.
Most human genome centers have outreach and education programs. Some examples are given below with contact information.
Baylor College of Medicine Human Genome Center: Presentations for junior and senior high school teachers and students, including video, slide presentation, lecture, discussions, brochures, and information on teaching materials and continuing-education opportunities. Quarterly newsletter. [Contact: Belinda Rossiter (Fax: 713/798-5386, firstname.lastname@example.org)]
Cooperative Human Linkage Center, University of Iowa: New high school curriculum module on nontraditional inheritance in collaboration with BSCS staff. Teacher workshops on technology and ELSI issues. Science teachers hosted in laboratory for 2 weeks to 3 months. Summer training for high school students. Three-month visiting fellowship program for nonscientist professionals demonstrating strong interest in ELSI issues. Gene-mapping project developed for use in secondary science classrooms. Newsletter. Collaborations in Science and Technology Radio Project. [Contacts: Nancy Newkirk (email@example.com) or Jeffrey Murray (firstname.lastname@example.org), Fax: 319/335-6970]
Lawrence Berkeley Laboratory (LBL) Human Genome Program Coordination: ELSI Issues in Science seminars, lectures for LBL staff, ELSI curriculum for WWW. Student and teacher training programs and research opportunities for community college students. Lectures at high schools, colleges, universities, and community events. Postdoctoral fellowships. Summer and semester-long research programs. Summer internships for minority high school students and teachers. ELSI in Science Home Page (http://www.lbl.gov/Education/ELSI/ELSI.html) [Contact: Catherine Pinkas (Fax: 510/486-5717, email@example.com) LBL Human Genome Center: Tours for students, teachers, and lay people. [Contact: Jennifer Knox (Fax: -6746, firstname.lastname@example.org)]
Lawrence Livermore National Laboratory Human Genome Center: Center tours for high school and college classes, medical students, and visiting congressional aides; summer training for teachers and internships for high school and college students; 2-week traveling course in molecular biology for local schools. Lectures in high schools and colleges and talks to civic groups. [Contact: Linda Ashworth (Fax: 510/422-2282,Ashworth1@llnl.gov)]
Los Alamos National Laboratory Center for Human Genome Studies: Twelve invited lectures to various New Mexico organizations each year. Los Alamos Science: The Human Genome Project distributed to individuals, universities, high schools, medical schools, and private companies. Comprehensive database of ELSI publications developed by Michael Yesley and staff; three editions of printed bibliography published since 1992. Library collection, including copies of most materials, open to researchers; custom searches through Yesley (Fax: 505/665-4424, email@example.com).
Students from Gunn High School in Palo Alto, California, put together a YAC map model during a Stanford Human Genome Center tour.
Stanford Human Genome Center: Three high school curriculum units on DNA profiling and genetic disease testing, screening, and treatment; laboratory experiments integrated with social and ethical decision making. Teacher workshops, mobile laboratory kits, and school open houses. Lectures on genome science and human genetics for teachers and students, summer research internships, support for local public science museums, and genome center tours. Project partially supported by Perkin Elmer Corporation. [Contacts: Lane Conn (firstname.lastname@example.org) and Cynthia Keleher (email@example.com), Fax: 415/812-1916)]
University of Michigan Medical Center, Diane Baker (Fax: 313/764-4133): One-week workshops (including resource material) for high school teachers. One-week course for genetic counselors; covers molecular diagnostics, genetic counseling, and the Human Genome Project.
Air Academy High School, Colorado Springs, Doug Lundberg (Fax: 719/472-1413, firstname.lastname@example.org): One-week summer course on genetic engineering sponsored by the Colorado Department of Education for 8 to 12 new and 10 to 20 returning teachers; video tapes and student discussions via Internet during school year. GENTALK Listserv created and moderated by Lundberg for teachers, students, and researchers. Addresses laboratory protocols, technical questions, genetic engineering, and bioethical issues. No charge. To subscribe, send a message to email@example.com with subscribe gentalk firstname lastname in the body.
Johns Hopkins University, Robert Robbins: WWW base page (url no longer available) under development; access to growing collection of technical and educational materials on molecular biology and informatics, presented in Adobe Acrobat format (which gives camera-ready quality). Site includes manuscripts, preprints, reprints, slides, transparencies, and data relevant to computational biology. Links to sources for downloadable free Acrobat Reader software.
Kingwood College Biotechnology Department, Kingwood, Texas, Brian Shmaefsky (Fax: 713/359-1612, firstname.lastname@example.org): Demonstrations at public schools about the impact of biotechnology and genomic information on daily life, career opportunities in biotechnology. Biotechnology workshops for teachers.
University of Stellenbosch (US) and Medical Research Council Centre for Molecular and Cellular Biology, Cape Town, South Africa, Valerie Corfield (Fax: +27/21-931-7810, email@example.com): US TOO (Teacher Operation Outreach) program to train teachers through workshops in molecular genetics and ethical issues.
Washington University, St. Louis, Cynthia Moore (Fax: 314/935-4432): Development and field testing of a molecular genetics curriculum unit for all levels of high school students, emphasizing hands-on activities and bioethical decision making. Funded by the NIH Science Education Partnership Award Program.
Access Excellence (url no longer available): Genentech-sponsored initiative launched last year with a 5-day course for 105 biology teachers from all 50 states and Puerto Rico. Computer networking via America Online (AOL) to connect teachers with researchers, computerized information services, and each other. Three-week Science Seminar online discussion group (to volunteer, send message to BioEditAE@aol.com describing topic chosen). AOL software, free diskette containing 50 favorite lesson activities of the AE fellows in Macintosh or DOS, and quarterly newsletter: 800/295-9881.
Edison BioTechnology Centers, Ohio: Science and Societal Issues Symposium of presentations by high school students, modeled on a Lawrence Hall of Science project. Examples of 1995 student research topics: genetic testing, gene therapy, fetal tissue research, and release of genetically engineered microorganisms. [Contact: Bettie Sogor, Symposium Coordinator (Fax: 216/229-7323)]
Human Genome Symposium for Teachers: One-day workshop conducted by Lynne Gordon (San Diego High School, Fax: 619/231-0973, Lgordon@ec.edcs.k12.ca.us) and Patricia Winter (General Atomics, Fax: 619/455-3379, firstname.lastname@example.org). Hosted and underwritten by General Atomics, which also sponsors other teacher workshops.
Keys to Science Institute, Keystone, Colorado: Intensive 12-day summer teacher training in molecular and cellular biology with emphasis on the role of biotechnology in current medical and scientific research. Interested corporations sponsor one or more teachers. Teachers are matched with a resource liaison mentor in their area, often a practicing scientist from the sponsoring company, who helps to implement the institute curriculum in the classroom. [Mary Schwartz, Teacher Institutes Coordinator, Keystone Science School (Fax: 970/468-7769, email@example.com)]
Woodrow Wilson National Fellowship Foundation (WWNFF): Biology institutes stressing hands-on teaching and learning strategies in selected themes (including bioethics, biotechnology, and evolution) relevant to middle- and secondary-level teachers. Administered by the foundation's National Leadership Program for Teachers (NLPT) and funded by the Howard Hughes Medical Institute. Through national competition, 50 teachers are chosen for each institute. Participants may apply for outreach grants; teacher teams lead 1-week workshops at selected sites nationwide. [NLPT; WWNFF; CN5281; Princeton, NJ 08543-5281 (Fax: 609/452-0066, firstname.lastname@example.org)]
[Anne Adamson, HGMIS, with introductory text by Sarah Elgin, Washington University, St. Louis]
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