DOE '99 Oakland Highlights
Meeting Intro
HGP Progress, Challenges
Joint Genome Institute
JGI Facility Opening
Sequencing
Device Speeds Sequencing
Chromosome 19 Genes
Functional Genomics
Sample Prep System
Informatics
Education & Bioethics
Microbial Genomes
Next Meeting Feb. 2000

Genome Project
Accelerated Timetable
FY1999 Budgets
JGI Refits Facility
Progress

In the News 
 Drosophila Near Completion
Directors, Researchers Receive Awards
Chromosomes 21, 22 Near Finish
Human MHC Region Sequenced
Mouse Probes Aid Mapping
Genetic Testing Committee
DOE Labs & Biomedicine
Biomedical Engineering Proposals
Drug Firms Create SNP Resource
SBIR 1999 Awards
HUGO News
1999 Hollaender Winners

Microbial Genomics 
EcoCyc Database for E. coli
Developing EcoCyc
Thermotoga Sequence
Clostridium Sequenced
Microbial Gene Finder
Neisseria Sequence
Microbial Web Sites

Ethical, Legal, and Social Issues
Education, Counseling Foundation
 ELSI Studies
ELSI Retrospective
Protecting Privacy

Informatics 
MGI 2.2 Released
DNA Repository

Web, Other Resources, Publications 
Metabolic Pathways
New Staden Package
PDB Newsletter
Polymorphism Database
Bacterial Protein Database
DOE BER Publications
HGP Information Web
Biotechnology Business Webs
Behavioral Genetics
Office of Science Reports
Articles on Genetics

Funding 
Genome Research Funding

Meeting Calendars & Acronyms 
Genome & Biotech Meetings 
Training Courses & Workshops 
Acronyms 

HGN archives & subscriptions 
HGP Information home

ELSI and Informatics

Education and Counseling Foundation Established

The newly established Foundation for Genetic Education and Counseling will develop and promote genetic literacy about complex human diseases for the general public and healthcare professionals. The first educational programs will target individuals affected by or at risk for schizophrenia or bipolar disorder, and genetic counseling services will be developed for those who have participated in genetic-research protocols.

Ann Pulver (Johns Hopkins School of Medicine) is foundation president, and initial funding is from Genset, a French biotechnology company engaged in human genome analysis.

Daily operations of the foundation are the responsibility of Joseph McInerney, a longtime grantee of the DOE Human Genome Program and former director of the Biological Sciences Curriculum Study (BSCS) in Colorado Springs, Colorado. Roger Bybee succeeded McInerney as BSCS director. [Contact: McInerney, 410/955-0455, joemcinerney@genetic-medicine.org]

ELSI Studies

The following two research studies, supported by the Ethical, Legal, and Social Issues component of the DOE Human Genome Program, are available on the Web.

Report on Family Attitudes

Pathways and Barriers to Genetic Testing and Screening: Molecular Genetics Meets the High-Risk Family (1997), Troy Duster (University of California, Berkeley) and Diane Beeson (California State University, Hayward). Now available to the public, the study's major finding was that all high-risk families, regardless of their cultural backgrounds, adapt genetic information they are given to fit the divergent values and priorities of family life. Sickle cell disease, cystic fibrosis, and thalassemia were chosen for investigation because they are found primarily in different ethnic and racial groups. To obtain a copy of the report, contact Janice Tanigawa; Institute for the Study of Social Change; 2420 Bowditch St.; University of California; Berkeley, CA 94720 (510/642-0813, Fax: -8674).

Trottier Report on Web

Public Sector Genetic Services in Florida and Georgia: Current Status and Potential Issues Raised by the Human Genome Project (1996), Ralph Trottier (Morehouse University) and Lee Crandall (University of Illinois, Champagne). Now on the Web, the study explores the effects of changing science and technology on public genetic services in two states (www.ornl.gov/hgmis/resource/trottier.html).

ELSI Retrospective

DOE ELSI Program Emphasizes Education, Privacy: A Retrospective (1990-99), Daniel Drell of DOE and Anne Adamson of HGMIS. This comprehensive review of research projects funded by the ELSI component of the DOE Human Genome Program is available in print and on the Web (www.ornl.gov/hgmis/elsi/elsi.html#products). The retrospective discusses goals and provides such specifics as resource availability, Web sites, and contacts. It is accompanied by a list of products generated by DOE ELSI projects for the same period. For a print copy, contact Human Genome Management Information System (HGMIS), Oak Ridge National Laboratory, 1060 Commerce Park, MS 6480, Oak Ridge, TN 37830.

The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v10n3-4).