Cancer-Related Genetic Testing and Counseling: Workshop Proceedings (2007)

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

1 Introduction These proceedings of a workshop presented to the Institute of Med- icine’s (IOM) National Cancer Policy Forum (the forum) on March 30, 2007, are the result of forum discussions about genetic testing and counsel- ing at its meetings on June 16 and October 30, 2006. Those discussions, led by forum members Betty Ferrell and Patricia Ganz, noted that genetic testing and counseling are becoming more complex and important for informing patients and families of risks and benefits of certain courses of action, and yet organized expert programs are in short supply. The subject matter involves not only the scientific and clinical aspects but also workforce and reimbursement issues, among others. Drs. Ferrell and Ganz proposed that the forum could provide a useful review of the various important implications of these issues by holding and reporting a workshop on the subject. They volunteered to work with staff to organize and lead such a workshop. The agenda for the workshop is reproduced in the appendix to these proceedings. Chapter 2 includes the presentations of the invited speakers and the comments of speakers, forum members, and others in attendance as transcribed and edited to eliminate redundancies, gram- matical errors, and otherwise make them more readable. Material from PowerPoint presentations has been added to the text to clarify the speakers’ messages as needed. This workshop consumed the major part of a regularly scheduled meeting of the forum. The forum was established as a unit of the IOM on May 1, 2005, with support from the following agencies of the U.S. Depart-  

 cancer-RELATED GENETIC TESTING AND COUNSELING ment of Health and Human Services (DHHS): the National Cancer Insti- tute (NCI), the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), the Food and Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), and the Health Resources and Services Administration (HRSA); as well as from the following private-sector organizations: the American Cancer Society (ACS), the American Society of Clinical Oncology (ASCO), C-Change, and (for the first year only) UnitedHealth Group. The forum is a successor to the IOM and National Research Council’s (NRC’s) National Cancer Policy Board (1997–2005) and was designed to provide its 21 governmental, industry, and academic members a venue for exchanging information and presenting individual views on emerging policy issues in the nation’s effort to combat cancer. Publication of these proceedings informs the forum and, in addition, provides an opportunity to make the information and views presented and discussed at the workshop available to a wider public audience. Only what was actually communicated at the workshop is reported here without additional comment, interpretation, or analysis, although these proceedings might serve as an opening to additional IOM study at some future time.