COPR Members to Present at APA Symposium
May 18–23, 2002
Philadelphia, PA

COPR members Rodrigo Muñoz, M.D., Debra Lappin, J.D., and Rosemary Quigley, J.D., M.P.H., will serve as presenters at a symposium, "Global Psychiatry and Patient's Rights: Informed Consent," as part of the annual meeting of the American Psychiatric Association (APA). The symposium centers on principles of human research protections as discussed by COPR. In an introductory presentation, Ms. Lappin will review the role of informed consent in research protections, the purpose and meaning of informed consent, the necessary elements of informed consent, and how things can go wrong. Ms. Quigley will discuss human research protections and informed consent as they relate to persons with mental illness. Harold Eist, M.D., Chair of the APA Commission on Global Psychiatry, and Norman Sartorius, M.D., President of the European Psychiatric Association, will discuss the national and international applications of regulations guiding human research protections.

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Muñoz to Represent COPR at NINR Meeting on Biodefense
May 14–15, 2002
Chevy Chase, MD

Rodrigo Muñoz, M.D., was invited to participate in the spring science workgroup "Increasing Nursing Research Opportunities in Biodefense," sponsored by the National Institute of Nursing Research. His participation was requested because of his service as a COPR member, his experience in psychiatry, and his publication record in the area of behavioral issues.

The workgroup will highlight the current knowledge in biodefense and identify opportunities for nursing research in this area. Investigators in the fields of infectious disease, medicine, nursing, microbiology, immunology, psychiatry, and ethics will all lend their expertise to improving the ability of nurses to help victims of bioterrorism manage their crises and maintain their quality of life.

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Kalabokes Participates in Breast Cancer Meeting
April 2002
Charlotte, NC

Kenneth Olden, Ph.D., Director of the National Institute on Environmental Health Sciences (NIEHS) invited COPR member Vicki Kalabokes to participate in the NIEHS Brainstorming Session on Breast Cancer and the Environment. Participants offered their input on gene-environment interactions in the developing breast and breast cancer, the use of animal models to study environmental influences on the breast, and the role of consumer and community involvement in shaping the research agenda in this area. Ms. Kalabokes and two representatives from Marin Breast Cancer Watch represented the consumer voice.

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Montoya Serves on Peer Review Oversight Group
February 2002
NIH Campus

COPR member Isaac Montoya, Ph.D., represented COPR on the Peer Review Oversight Group (PROG) headed by Wendy Baldwin, Ph.D., NIH Deputy Director for Extramural Research. This group is the principal advisory body on trans-NIH peer review issues. Dr. Montoya participated in the Regulatory Burden Advisory Group, where he is currently involved in reviewing and addressing the recent Notice of Proposed Rule-Making. This notice implements the provisions of the Health Insurance Portability and Accountability Act.

In addition to his responsibilities with PROG, Dr. Montoya has also assisted the National Institute on Drug Abuse and the National Institute of Deafness and Other Communication Disorders. He also represented COPR at the swearing-in ceremony of new National Cancer Institute director Andrew von Eschenbach, M.D.

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Yee Starts a New Tradition at Hawaii Elementary School
November 2001–Spring 2002
Big Island in Hilo and Honolulu, HI

COPR member Doug Yee was instrumental in coordinating the public events for the National Institutes of Health-Hawaii Research Partnership Site Visit. NIH leaders participated in public outreach events on Big Island in Hilo and in Honolulu, HI. These events included a lecture at the University of Hawaii campus and visits to local hospitals, rotary clubs, and other community groups. Mr. Yee's efforts have made a long-lasting impact, especially for Joyce Tsuda's fourth grade class. NIH Acting Deputy Director Yvonne Maddox, Ph.D., visited Ms. Tsuda's class as part of the site visit. Dr. Maddox had such a good time that she now sends surprise packages each month: boxes of health awareness goodies. These packages have become highly popular with the fourth graders; their favorite goodies so far are brain-shaped squeeze balls that Dr. Maddox sent in observance of Brain Awareness Week.

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Anderson in Many Places

As a COPR member and now as a COPR Alumnus, Mike Anderson continues to represent NIH wherever the need arises. In February, he gave the keynote address at an Oklahoma Biomedical Summit, a meeting for scientists interested in furthering biotechnology. He has also served on a panel for a PBS show, Issues and Ethics of Genetic Reproduction, produced by Fred Friendly Productions. National Human Genome Research Institute director Francis Collins, M.D., Ph.D., served on the same panel. Mr. Anderson has spoken or written about NIH programs at many meetings and symposia.

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Claudio Works Toward Eliminating Health Disparities

Luz Claudio, Ph.D., is a member of the Health Disparities and Environmental Justice Working Group for the National Children's Study (NCS). The Working Group aims to assist NIH in addressing issues of inclusion and retention of minority populations in the NCS, a landmark study that will recruit pregnant women to assess their environmental exposures. Children of the study participants will be followed throughout development to determine whether environmental exposures are associated with diseases later in life. The Working Group will design methods to include a broad representation of different ethnic and racial groups in the study.

Dr. Claudio also presented a lecture, "Societal Factors that Affect Children's Health," at the Annual Conference of the Health Effects Institute in Seattle, Washington on April 28. She spoke on the contribution of environmental justice factors to health disparities in minority populations.

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Yee Invited to Serve on Hawaii State ICC

The Hawaii State Biomedical Research Infrastructure Network (BRIN), funded by the National Center for Research Resources, has invited COPR member Doug Yee to serve on its Institutional Development Award (IDeA) Coordinating Committee (ICC). The IDeA is a merit-based, peer-reviewed program that broadens the geographic distribution of extramural NIH funding, strengthens an organization's infrastructure, and increases its capacity to conduct cutting-edge biomedical and behavioral research. Eligibility for the IDeA program is limited to those states that attained a success rate of less than 20 percent in competing for NIH grants. States that received less than $70 million, on average, in NIH support from 1995 to 1999 are also eligible. The Hawaii State BRIN's ICC determines which applications will be submitted under those federal programs with limited submissions, and it settles disputes among Hawaii State BRIN partners. BRIN encourages the development and sharing of research resources among state partners, with the hopes of increasing the number of competitive researchers in the state.

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Welcome New Members!

The NIH Director's Council of Public Representatives extends a warm welcome to eight new members:

• Nancye W. Buelow, of Clyde, NC, an advocate for people with genetic conditions and one of the "100 Women Volunteers Making a Difference" named by the ECKERD and Points of Life Foundations in 2000;
  
  
• Debra S. Hall, of Lexington, KY, a Registered Nurse and Critical Care Development Specialist and a doctoral degree candidate at the University of Kentucky;
  
  
• Kimberley Hinton, of Kansas City, MO, the Executive Director of the AIDS Council of Greater Kansas City, who also works with the Dartmouth Black Alumni Association and on the advisory board of The Glimmer Fund, which supports women and families following pregnancy loss;
  
  
• Theodore Mala, M.D., M.P.H., of Anchorage, AK, the Director of Tribal Relations for the Southcentral Foundation, where he coordinates health initiatives for 53 villages served by the Alaska Native Medical Center and directs the foundation's Traditional Healing Program;
  
  
• Lawrence B. Sadwin, of Warren, RI, the Chairman of the Board of the American Heart Association, who also works with the Mended Hearts national support group for people with heart disease;
  
  
• John Shlofrock, of Northfield, IL, the Chief Executive Officer for Barton Management, Inc., the Vice President of the Illinois Council on Long-Term Care, and an advocate for senior citizens and for persons with mental illness;
  
  
• Zelda Tetenbaum, of Hinsdale, IL, a science and health educator and an advocate for persons with brain tumors; and
  
  
• Donald E. Tykeson, of Indian Wells, CA, a pioneer in the communications industry, who founded Tykeson Foundation, which funds health care and medical research, education and arts initiatives, and children's programming.

The NIH press release and the complete biographies of these new members can be found on the COPR Web site at http://copr.nih.gov/COPR_members.shtm.

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April 2002 COPR Meeting Summary

The seventh meeting of the Director's Council of Public Representatives met on April 15–16, 2002. After welcoming new members, Acting NIH Director Ruth Kirschstein, M.D., informed COPR of the many changes at NIH, including the recent White House announcement that it has formally sent Dr. Elias Zerhouni's nomination as the new Director of NIH to the Senate. Dr. Kirschstein also announced the resignation of Anne Thomas, Associate Director of Communications, and introduced John Burklow, the new Acting Associate Director of Communications.

NIH presenters at the meeting included Anthony Fauci, M.D., Director of the National Institute of Allergy and Infectious Diseases; Kenneth Olden, Ph.D., Director of the National Institute of Environmental Health Sciences; Wendy Baldwin, Ph.D., Deputy Director for Extramural Research; John Ruffin, Ph.D., Director of the National Center for Minority Health and Health Disparities.

During COPR's work group day, members invited Raynard Kington, M.D., Ph.D., Acting Director of the National Institute on Alcohol Abuse and Alcoholism; and Steven Katz, M.D., Ph.D., Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, Myrl Weinberg, President of the National Health Council and member of the NIH Committee on Research Priority Setting, and Carol Lurie, Founder of the International Juvenile Diabetes Research Foundation, to join them in issue specific work group discussions.

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