March 2001

Grant Results

SUMMARY

The March of Dimes Birth Defects Foundation organized two meetings of the Genetics Awareness Coalition. It was established in August 1998 to explore potential collaboration among federal agencies and professional groups and to discuss the structure of a campaign to increase public awareness of advances in genetics and their impact on health and health care.

Federal coalition members included the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Health Care Financing Administration (HCFA) and the Health Resources and Services Administration (HRSA). Other institutional members included the American Medical Association (AMA) and the American Cancer Society. See the Appendix for a complete list.

Key Results
Two coalition meetings were held on December 6–7, 1998, and June 6, 1999, both in Arlington, Va. They drew 25 and 26 attendees, respectively.

December Meeting
During the December 1998 meeting, the coalition drafted as a statement of purpose: "Increase [audience] [knowledge] of existing and emerging genetic information and its applications to enable or to empower individuals, families, and communities to participate in decision making regarding genetic health care issues."

The coalition also identified potential target audiences, including: legislators and policymakers, news media, community leaders, community organizations, and men and women of reproductive age.

June Meeting
During the June 1999 meeting, the coalition reviewed and made plans to finalize a letter of intent (drafted by two coalition members) outlining a plan for a national genetics public awareness campaign to expand public awareness and to help maximize the benefits and minimize the risks of the genetic revolution.

Funding
The Robert Wood Johnson Foundation (RWJF) provided $14,680 in partial funding to hold the meetings. The Genetics Services Branch of the Maternal and Child Health Bureau of HRSA and the March of Dimes also provided some funding for the meetings.

After the Grant
The coalition submitted the letter of intent with a preliminary request for funding to RWJF, but subsequent conversations between the coalition and RWJF did not lead to a formal proposal. Instead, HRSA provided $3.5 million to the March of Dimes under a cooperative agreement in which the agency and the March of Dimes will establish and maintain a consumer network for genetics resources and services information. This five-year project began in June 2000. The Genetics Awareness Coalition no longer exists, but many of its former members are expected to participate in the HRSA-funded project.

 See Grant Detail & Contact Information
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GRANT DETAILS & CONTACT INFORMATION

Project

Support of Meetings on Genetics Awareness for Public Health Practice

Grantee

March of Dimes Birth Defects Foundation, Western Washington Chapter (Seattle,  WA)

  • Amount: $ 14,680
    Dates: November 1998 to June 1999
    ID#:  035750

Contact

Robert M. Fineman, M.D., Ph.D.
(206) 723-6440
drbob@u.washington.edu

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Genetics Awareness Coalition Members

Maricela Aguilar (Consumer)

Timothy Baker
Deputy Director
Office of Genetics & Disease Prevention
Centers for Disease Control and Prevention

Robin J.R. Blatt
Coordinator, Massachusetts Genetics Program
Children with Special Health Care Needs
Massachusetts Department of Public Health

Treeby Brown
Association of Maternal & Child Health Programs

Jacalyn Bryan
Deputy Director for Policy and Programs
Association of State and Territorial Health Officials

Jeff Caballero
Associate Director of Programs
Association of Asian Pacific Community Health Organizations

Ellen Cutler
Program Chief of Staff's Office
March of Dimes

Mary Davidson
Executive Director
Alliance of Genetic Support Groups

Elizabeth Dean-Clower
Health Education Specialist
National Cancer Institute

Daniel Drell
Department of Energy

Jan DuGaw (Consumer)

Louise Elbaum
Coordinator
Great Lakes Regional Genetics Group

Bob Fineman (facilitator)
Medical Consultant
Washington State Department of Health

Patricia Foote
Consumer Advocate
Pacific Southwest Regional Genetics Group

Fred Fridinger
Office of Genetics & Disease Prevention
Centers for Disease Control and Prevention

Kimberly Geissman
Office of Genetics & Disease Prevention
Centers for Disease Control and Prevention

Tracy Gilris
Alliance of Genetics Support Groups

Gerri Gurvitch
American College of Medical Genetics

Alan Guttmacher
Senior Advisor to the Director for Clinical Affairs
National Human Genome Research Institute

James Hanson
Senior Advisor for Medical Genetics
Division of Cancer Control & Population Science
National Cancer Institute Epidemiology and Genetics

Cecelia Hinkle
Health Insurance Specialist
Health Care Financing Administration

Cynthia Hinton
Project Coordinator
Pediatrics/Medical Genetics
Council of Regional Networks for Genetic Services/Emory University

Kay Johnson
Consultant
Johnson Group Consulting, Inc.

Shirley L. Jones
Director of Clinical Services
Genetic & IVF Institute

Susan Kaba
Program Assistant
National Association of City and County Health Officers

Heidi Keller
Washington State Department of Health

Muin J. Khoury
Acting Director
Office of Genetics & Disease Prevention
Centers for Disease Control and Prevention

Richard Levinson
American Public Health Association

Patricia McCabe
National Marfan Foundation

Ilana Mittman
Assistant Professor of Pediatrics
Howard University College of Medicine
National Society of Genetic Counselors

Paul Murphy
Consumer Advocate
International Society for Mannosidosis

Robert Murray
Chief, Division of Medical Genetics
Howard University

Susan Nayfield
Program Director
Epidemiology and Genetics Programs
National Cancer Institute

Victoria Odesina
Consumer Advocate
The Alliance
New England Regional Genetics Group

Constance Pechura
Senior Program Officer
The Robert Wood Johnson Foundation

Kathy Peppe
Chief
Division of Family and Community Health Services
Ohio Department of Health

Heather Pierce
Association of State and Territorial Health Officers

Michele Lloyd-Puryear
Chief
Genetics Services Branch
Division of Services for Children with Special Health Needs
Maternal and Child Health Bureau
Health Resources and Services Administration

Melinda Mercer Ray
Director
Health Policy/Advocacy
Association of Women's Health Obstetric & Neonatal Nurses

Owen Rennert
Special Assistant to the Director CRMC
National Institute of Child Health & Human Development

A. Rubin
American Lung Association

Brigid McHugh Sanner
Executive Vice President
Communications & Advocacy
American Heart Association

Debbie Saslo
American Cancer Society

Sedra Schiffman
Consumer Advocate
Tay Sachs

Kristine Sheedy
Health Communication Specialist
Office of Genetics & Disease Prevention
Centers for Disease Control and Prevention

M. Priscilla Short
Director
Biomedical Science and Clinical Research
American Medical Association

Anthony Smith
Consumer Advocate
National Marfan Foundation

Robert Smith
American Cancer Society

L. Snow
Association of State and Territorial Health Officers

Elizabeth Strass
American Society of Human Genetics

Beth Steele
Manager, Obstetrics Practice Committees/Projects
American College of Obstetricians and Gynecologists

Sharon Terry
Consumer Advocate
Alliance of Genetic Support Groups

Virginia Wanamaker
Health Care Financing Administration

Vicky Whittemore
National Tuberous Sclerosis Foundation

Nancy White
President
Full Circle Associates

J. Yost
Health Care Financing Administration

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Report prepared by: Lori De Milto
Reviewed by: Robert Narus
Reviewed by: Janet Heroux
Program Officer: Constance M. Pechura

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