© 2000 by Oxford University Press
Journal of the National Cancer Institute, Vol. 92, No. 6, 452-456,
March 15, 2000
© 2000 Oxford University Press
COMMENTARY |
Participation in the Cooperative Family Registry for Breast Cancer Studies: Issues of Informed Consent
Affiliations of authors: M. B. Daly, Fox Chase Cancer Center, Cheltenham, PA; K. Offit, Memorial Sloan-Kettering Cancer Center, New York, NY; F. Li, Dana-Farber Cancer Institute, Boston, MA; G. Glendon, Ontario Cancer Genetics Network, Cancer Care Ontario, Canada; A. Yaker, Health Consultant/Consumer Advocate; D. West, Northern California Cancer Center, Union City; B. Koenig, Center for Biomedical Ethics, Stanford University School of Medicine, CA; M. McCredie, New South Wales Cancer Council, Kings Cross, Australia; V. Venne, Huntsman Cancer Research Center, Salt Lake City, UT; S. Nayfield, D. Seminara, National Cancer Institute, Bethesda, MD.
Correspondence to: Mary B. Daly, M.D., Ph.D., Fox Chase Cancer Center, 510 Township Line Rd., Cheltenham, PA 19012 (e-mail: mb_daly@fccc.edu).
 |
INTRODUCTION |
|---|
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.
|
THE COOPERATIVE FAMILY REGISTRY FOR BREAST CANCER STUDIES |
|---|
The Cooperative Family Registry for Breast Cancer Studies (CFRBCS) is an
|
HISTORY OF THE CONSENT PROCESS |
|---|
|
CONTENT OF THE PROPOSED CONSENT FORM |
|---|
|
CONTENT AREAS OF PARTICULAR SIGNIFICANCE FOR REGISTRY PARTICIPATION |
|---|
Privacy and Confidentiality
Use of Data and Biospecimens by Investigators Outside the CFRBCS
Communication of Registry Research Results
Process Issues
Impact of Other Regulatory and Advisory Bodies
|
CONCLUSION |
|---|
|
NOTES |
|---|
|
REFERENCES |
|---|
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  M. J Khoury, R. Millikan, J. Little, and M. Gwinn The emergence of epidemiology in the genomics age Int. J. Epidemiol., October 1, 2004; 33(5): 936 - 944. [Full Text] [PDF]
|
|
|
|
 |
|
 S. L. Glaser, J. L. Hsu, and M. L. Gulley Epstein-Barr Virus and Breast Cancer: State of the Evidence for Viral Carcinogenesis Cancer Epidemiol. Biomarkers Prev., May 1, 2004; 13(5): 688 - 697. [Abstract] [Full Text] [PDF]
|
|