title: Defining, identifying, and studying high-risk families: developing cohorts for epidemiologic study.
abstract: Many issues arise in planning epidemiologic studies of individuals at high risk for developing hereditary cancers. The most important are (a) determination of the information that can best be studied in epidemiologic settings; (b) selection of proper study designs; (c) acknowledgment of the ethical, psychosocial, and legal issues that will arise in these studies; and (d) anticipation of the logistical issues involved in large, multicenter studies. The breakout session "Developing Cohorts for Epidemiologic Study: Defining and Identifying High-Risk Families" examined these issues, and the results of that session are summarized here. There was general consensus that little information exists regarding the prevalence of genetic mutations that predispose individuals to increased cancer risk, the risks conferred by specific mutations and by gene-environment interactions, and the efficacy of potential interventions. Adequately controlled observational and randomized studies provide the best mechanism for obtaining this information, despite the considerable ethical and strategic difficulties that will arise in the planning and conduct of such studies.
authors.affiliation: Division of Biostatistics, Dana-Farber Cancer Institute, Boston, Mass, USA.
authors.forename: D P
authors.initials: DP
authors.lastname: Harrington
authors.forename: A S
authors.initials: AS
authors.lastname: Whittemore
mesh_terms: D001943:Breast Neoplasms / Q000453:epidemiology / Q000235:genetics*; D003110:Colonic Neoplasms / Q000453:epidemiology / Q000235:genetics*; D004992:Ethics, Medical; D005260:Female; D005820:Genetic Testing / Q000331:legislation & jurisprudence*; D006801:Humans; D010051:Ovarian Neoplasms / Q000453:epidemiology / Q000235:genetics*; D011237:Predictive Value of Tests; D012107:Research Design; D012307:Risk Factors