Participation in the Cooperative Family Registry for Breast Cancer Studies: Issues of Informed Consent

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Abstract
No universal surveillance system collects information on all cases of cancer in the United States. Instead, cancer data are assembled in a variety of ways. Several very good population-based registries collect data in a fairly uniform manner, but different hospital-based registries often have different formats for data reporting, collection, coding, and analysis. Outcomes of interest include estimates of incidence, prevalence, and mortality; the identification of risk factors through epidemiologic analyses; the evaluation of patterns of care; and financial and resource planning. Few of the registries, however, have any genetic information. The recent identification of genes associated with high penetrance for breast cancer has brought a new focus to the study of cancer genetics—one that emphasizes the identification of families with heritable patterns of cancer—and has created the need for the development of registries that are defined by familial cancers.