Convene similar additional conferences to focus on different aspects of the very complex issue of community-based clinical research. Conferences should be structured around particular themes and modified, as needed, to reduce potential barriers to participation (e.g., location and organization). Include fewer formal presentations; more time for interactive dialogue; participation of the media and biotechnology industries; greater representation of ethnic groups (e.g., Asian Americans, Native Americans, Hispanic Americans); distribution of pre-conference background materials consisting of brief, written summaries of pertinent issues; and verbatim recording of all conference deliberations. Potential topics for future conferences are:
- group rights vs. individual rights in the context of biomedical research;
- issues relating to research on stored tissue samples;
- ownership of research data from community-based studies;and
- specific issues for international studies.
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Dr. Greenberg noted that this First Community Consultation was tremendously enlightening, and she thanked all the participants for the novel ideas and lessons they imparted during the presentations and discussions. She invited the participants to continue to provide input to her and said that additional consultations would follow.
The meeting was adjourned at 1:00 p.m. on Tuesday, September 26, 2000.
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Maricela Aguilar
Department of Pediatrics
Division of Genetics and Metabolic Disorders
The University of Texas Health Science Center
at San Antonio
7703 Floyd Curl Drive
San Antonio, TX 78229-3900
Marvin Cassman, Ph.D.
National Institute of General Medical Sciences
Building 45, Room 2AN12
Bethesda, MD 20892
Aravinda Chakravarti, Ph.D.
McKusick-Nathans Institute for Genetic Medicine
Jefferson Street Building, 2-109
Johns Hopkins University School of Medicine
Baltimore, MD 21287
Mildred Cho, Ph.D.
Stanford University School of Medicine
701A Welsh Road, Suite 1105
Palo Alto, CA 94304
Francis Collins, M.D., Ph.D.
National Human Genome Research Institute
Building 31, Room 4B09
Bethesda, MD 20892
Judith H. Greenberg, Ph.D.
National Institute of General Medical Sciences
Building 45, Room 2As25
Bethesda, MD 20892
Juha Kere, M.D., Ph.D.
PO Box 21 (Tukholmankatu 2)
00014 University of Helsinki
Helsinki
Finland
Suzanne Kindregan
5609 Ravenel Lane
Springfield, VA 22151
Ruth L. Kirschstein, M.D.
National Institutes of Health
Building 1, Room 126
9000 Rockville Pike
Bethesda, MD 20892
Greg Koski, Ph.D., M.D.
1380 Washington Street
Holliston, MA 01746-2215
Partha Majumder, Ph.D.
Indian Statistical Institute
Anthropology and Human Genetics Unit
203 Barrackpore Trunk Road
Calcutta, 700 035
India
Kim J. Nickerson, Ph.D.
American Psychological Association
750 First Street, NE
Washington, DC 20002-4242
Pilar N. Ossorio, J.D., Ph.D
. University of Wisconsin Law School
975 Bascom Mall, Room 9103
Madison, WI 53706-1399
Nancy Press, Ph.D.
Department of Public Health and Preventive Medicine
Oregon Health Sciences University
3181 Southwest Sam Jackson Park Road
Portland, OR 97201
Frances C. Rawle, Ph.D.
Medical Research Council
20 Park Crescent
London W1N 4AL
United Kingdom
Karen Rothenberg, J.D.
University of Maryland School of Law
Law and Health Care Program
500 West Baltimore Street
Baltimore, MD 21201
Yvette Roubideaux, M.D., M.P.H.
American Indian Physician Association
College of Public Health
University of Arizona
P.O. Box 245037
Tucson, AZ 85724
Charles Rotimi, M.D.
National Human Genome Center
Howard University
2216 6th Street, N.W., Suite 205
Washington, D.C. 20059
Charmaine D. Royal, Ph.D.
National Human Genome Center
Howard University College of Medicine
2216 6th Street, N.W., Suite 205
Washington, D.C. 20059