I am excited to launch this monograph series–designed to give access to the incredible work of disease-specific advocacy organizations. The face of advocacy is changing—as these organizations revolutionize translational research and service delivery on all levels and in all venues, the need for increased communication, sharing of current best practices and ‘how-to’ guides drives our decision to begin this monograph series.

This monograph describes the Genomics and Cancer Care and Advocacy Workshop, which formulated a proactive plan for advocacy involvement in the application of genomics into cancer care. Many people worked to make the workshop a meaningful and productive event, and have subsequently executed on the many recommendations. Genetic Alliance is particularly grateful to Patrick Terry, Director of Advocacy, Genomic Health; Kathleen Zeitz, Arizona Breast Cancer Coalition, Mary Anderlik Majumder, Baylor College of Medicine, and Kathy Hudson, Genetics and Public Policy Center, for their thoughtful planning, organization and support.

We also thank these organizations for their participation in crafting the recommendations:

  • Alliance for Lung Cancer Advocacy, Support, and Education
  • The Children's Cause, Inc.
  • Facing Our Risk of Cancer Empowered (FORCE)
  • Inflammatory Breast Cancer Research Foundation
  • Marti Nelson Cancer Foundation
  • National Alliance of Breast Cancer Organizations
  • National Breast Cancer Coalition
  • National Coalition for Cancer Survivorship
  • Ovarian Cancer National Alliance
  • Pancreatic Cancer Action Network
  • Patient Advocates in Research (PAIR)
  • Research Advocacy Network
  • Self-Help for Women with Breast or Ovarian Cancer (SHARE)
  • Sisters Network, Inc.
  • The Leukemia and Lymphoma Society
  • The Wellness Community
  • US TOO! Prostate Cancer Support Groups
  • Y-ME National Breast Cancer Organization
  • Young Survival Coalition

We invite you to share this monograph!

Signature

Image preface_sig.jpg
Sharon F. Terry, MA
President & CEO, Genetic Alliance
Washington, DC
16 November 2006

Preface

In the past several decades, oncologists and cancer researchers have come to recognize the importance of the role of advocacy organizations in cancer research and treatment. With genomics poised to become a major force in cancer care, advocacy organizations have an important role to play in traditional areas of concern such as patient education about new genomic technologies. Advocacy organizations also have the potential to serve as partners with clinicians, researchers, policy makers and others in developing an agenda for further research, creating guidelines for practice, and working for the passage of legislation to address problems such as genetic discrimination. With this in mind, we organized a workshop on Genomics, Cancer Care and Advocacy, with the sponsorship of the Genetics and Public Policy Center at John Hopkins University and Genetic Alliance. This report provides an overview of the workshop content and the proactive plan for advocacy involvement developed by participants. Participants in the Genomics and Cancer Care and Advocacy Workshop formulated a proactive plan for advocacy involvement in cancer care.

Representatives from patient advocacy organizations, drug companies, academia and policy institutes worked to develop a comprehensive set of action steps that can capitalize on the value advocates have to offer in the translation of basic science to services. The morning session included an overview by Francis S. Collins, M.D., Ph.D., Director of the National Human Genome Research Institute, National Institutes of Health, on the directions of research in genomics; a presentation by Nicholas Dracopoli, Ph.D., Vice President, Clinical Discovery Technologies, Genomics, Bristol-Myers Squibb, on the potential uses of biomarkers in refining and facilitating treatments; and a discussion by Janet Warrington, Ph.D., Vice President, Molecular Diagnostics and Emerging Markets Research and Development, Affymetrix Inc., on the fundamental need for standardization of new tests and assays used in this new era of genomic medicine.

The afternoon session included more specific presentations and the establishment of action plans in key areas such as education, collaboration, and best practices. Daniel Hayes, M.D., Professor of Internal Medicine at the University of Michigan and clinical director of the Breast Oncology Program at the University of Michigan Comprehensive Cancer Center, gave his perspective as a clinician on realistic expectations for genomic medicine. Sharon Terry, M.A., President and CEO of Genetic Alliance, reported her perspective and experience as an advocate with interests in genomic medicine, while Kathy Hudson, Ph.D. Founding Director of the Genetics and Public Policy Center, Johns Hopkins University, elucidated policy challenges and opportunities in the era of genomic medicine that are ripe for the intervention of disease advocates.