Informed consent for BRCA1 and BRCA2 testing

Barbara K. Rimer, Jeremy Sugarman, Eric Winer, Leslie G. Bluman, Caryn Lerman

Research output: Contribution to journalReview article

Abstract

While the cloning of BRCA1 and BRCA2 in 1994 and 1995 engendered great enthusiasm from cancer patients, their families and physicians, concerns about potential problems faced by those undergoing genetic testing were also evident. Although much can be learned from previous research on informed consent for testing and research for predictive genetic testing in diseases other than cancer, there are some specific issues related to cancer that make the questions more pressing, more difficult, and of larger social concern. Organizations such as the National Advisory Council for Human Genome Research, the American Society for Human Genetics, the American Society of Clinical Oncology and the Task Force for Genetic Testing have presented recommendations about informed consent for cancer susceptibility testing. However, many unanswered questions remain concerning the informed consent process. This review provides background on informed consent, summarizes studies that have been conducted in the area of genetic testing, with a focus on testing for BRCA1 and BRCA2, and details recommendations for achieving informed consent for genetic testing for cancer susceptibility and research on cancer genetics.

Original languageEnglish (US)
Pages (from-to)99-114
Number of pages16
JournalBreast Disease
Volume10
Issue number1-2
DOIs
StatePublished - Apr 1998
Externally publishedYes

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Fingerprint Dive into the research topics of 'Informed consent for BRCA1 and BRCA2 testing'. Together they form a unique fingerprint.

  • Cite this

    Rimer, B. K., Sugarman, J., Winer, E., Bluman, L. G., & Lerman, C. (1998). Informed consent for BRCA1 and BRCA2 testing. Breast Disease, 10(1-2), 99-114. https://doi.org/10.3233/BD-1998-101-212