Archive Site Provided for Historical Purposes
Sponsored by the U.S. Department of Energy Human Genome Program
In this issue...
Available in PDF
HGP and the Private Sector
In the News
Ethical, Legal, and Social Issues
Web, Publications, Resources
Meeting Calendars & Acronyms
FY 2000 sees the tenth cycle of applications, merit reviews, and awards in the Ethical, Legal, and Social Implications (ELSI) component of the DOE Human Genome Program (HGP). Of 26 applications received and reviewed by a peer panel, the DOE HGP funded 6new, 2 renewed, and 3small exploratory projects for FY2001. These are summarized below. A more complete version and abstracts of previous DOE ELSI projects are on the Web.
DOE ELSI goals encompass research on the uses, impacts, implications, privacy, and protection of genetic information in the workplace and in databases; ELSI implications of complex or multigenic characteristics and conditions; gene-environment interactions that result in diseases or disease susceptibilities; and human polymorphisms. DOE also produces and distributes relevant ELSI educational materials for the public or specified groups, especially Institutional Review Boards and Ethics Boards.
Model Program for Public Libraries
Miriam Pollack, North Suburban Library System, Chicago
Focus: Use libraries for education project to encourage public genetic literacy. Activities include organizing experts, gathering resources, and establishing programs about genetic science and ELSI issues.
Ethical Concepts in Laws Limiting Genetic Screening
Lynn Pasquerella and Lawrence Rothstein, University of Rhode Island, Kingston
Focus: Collect documents concerning laws and legislative proposals of ten eastern states and the federal government to determine how ethical concepts have influenced legislation on the use of genetic information in the workplace.
Genetics, Mental Illness, and Complex Disease Joe McInerney, National Coalition for Health Professional Education in Genetics, Baltimore
Focus: Produce an interactive CD-ROM for instructing genetic counselors about mental disorders believed to have a genetic basis.
Economic Analysis of HGP Intellectual Property Rights
David Bjornstad, Oak Ridge National Laboratory, Oak Ridge, Tennessee
Focus: Explore the economic implications of different intellectual-property strategies for commercializing genomic information and products. The work is based in part on the research of Rebecca Eisenberg (University of Michigan Law School).
Tribal Ethical, Moral, Cultural, and Legal Issues Related to the HGP
Mervyn Tano, Institute for Indigenous Resource Management, Denver
Focus: Introduce Native American tribes to the HGP by identifying specific factors that influence perceptions of genetic research. Educate members in the basics of genetics and related research and inform DOE HGP managers about Native American perspectives.
Bioinformatics and the HGP
Mark Bloom, Biological Sciences Curriculum Study, Colorado Springs, Colorado
Focus: Produce and distribute educational module, Bioinformatics and the Human Genome Project, for high school audiences. The module will address ELSI issues surrounding genetic databases and will introduce teachers and students to bioinformatics.
Judicial Conference for Maine, New Hampshire, and Vermont
Elizabeth Hodges, Administrative Office of the Courts, Concord, New Hampshire
Focus: Plan and conduct a conference to introduce judges of three states to the basics of genomics and genetics. The approach is modeled on the EINSHAC conferences that have trained some 1900 judges (see article).
Science Literacy Workshops for Public Radio
Barinetta Scott, SoundVisions Productions, Berkeley, California
Focus: Enlarge the pool of skilled public-radio science reporters and producers and increase the number and accuracy of science reports. Four-day workshops will teach basic science, journalistic skills, and methods for crafting complex science stories.
Science Education on the Internet Conference
Ray Gesteland, University of Utah, Salt Lake City
Focus: Plan and organize the second conference for developers and Webmasters of science and biological science sites. Maximize these resources by making the sites more effective and increasing their educational value.
SMALL EXPLORATORY PROJECTS
All Not Fit to Breed: Survivors of Americas First Eugenics Movement
Mary Bishop, Virginia Polytechnic Institute and State University, Blacksburg
Focus: Collect and preserve the experiences of some ten people forcibly sterilized under Virginias eugenics policies of the 1920s and conduct interviews with people in authority then.
Worker Perspectives on Complex Diseases
Laura Roberts, University of New Mexico, Albuquerque
Focus: Explore a possible connection between workplace exposures and complex genetic disorders by studying people with many different illnesses and examining occupational healthcare issues.
Genetics Conference for Clergy
Paul Sullins, Catholic University, Washington, D.C.
Focus: Hold a conference for the clergy, modeled on the EINSHAC series for judges (see article). The clergy often are counsels in cases involving moral and ethical issues, such as genetic test results and reproductive choices.
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v11n1-2).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.