Human Genome Project Information Archive
1990–2003

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 [url no longer available].

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).