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Genetic Services for Familial Cancer Patients: A Follow-Up Survey of National Cancer Institute Cancer Centers

From the Cancer Prevention Program, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center; and Departments of Epidemiology and Medicine, University of Washington, Seattle, WA

Address reprint requests to John D. Potter, MD, PhD, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, 1100 Fairview Ave N, M4-B814, PO Box 19024, Seattle, WA 98109-1024; e-mail: jpotter{at}fhcrc.org

PURPOSE: Anecdotal reports suggest that the volume of services offered to individuals concerned with hereditary cancer risk has increased substantially in recent years. As a follow-up to our 1993 survey, we sought to determine how the scope and volume of genetic services has changed between 1993 and 2002.

METHODS: We surveyed the 61 National Cancer Institute–designated cancer centers in operation in 2002 using an updated version of the questionnaire from 1993. Analysis included frequencies and summary statistics.

RESULTS: The majority of cancer centers responding (46 of 56 centers; 82.1%) provided some genetic services for evaluation of familial cancer, which is a higher proportion than in 1993 (50%; P < .01). Almost all centers (42 of 46 centers; 91.3%) provided services not only to cancer patients and their families, but also to individuals concerned with risk, which is a change (P = .01) from 1993, when 64.7% of centers offered such services. In addition, increases have been found for most other measures of services rendered for familial genetic services.

CONCLUSION: As public awareness of cancer susceptibility genes has grown markedly in recent years, the demand has also grown for genetic services to assess familial cancer risk. Major deleterious genetic mutations are rare, and much of the current research in genetic variation focuses on higher prevalence variants that carry lower risks. This may suggest that testing for mutations will move from genetics clinics to primary care and specialty practices. Thus, it is unclear whether the scope and volume of cancer center genetics services will continue to grow as rapidly as they have over the last decade.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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