Traceback: A proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach

Goli Samimi, Charlisse F. Caga-Anan, Michael Dean, Leah E. Mechanic, Lori M. Minasian, Mark E. Sherman, Lawrence C. Brody, Marcus Q. Bernardini, Stephanie Lheureux, Patricia A. Shaw, Janice S. Kwon, Ian G. Campbell, Paul A. James, Masataka Takenaka, David D. Bowtell, Georgia Chenevix-Trench, Michael Friedlander, Susan J. Ramus, Fergus J Couch, Joanne A. De HulluMarline G. Harmsen, Susan M. Domchek, Ronny Drapkin, Phuong L. Mai, Heather Spencer Feigelson, Mia M. Gaudet, Karen Hurley, Mark E. Robson, Felicitas Lacbawan, Thomas P. Slavin, Evan R. Myers, Lisa F. Rezende, Elizabeth M. Swisher

Research output: Contribution to journalArticle

21 Citations (Scopus)

Abstract

In May 2016, the Division of Cancer Prevention and the Division of Cancer Control and Population Sciences, National Cancer Institute, convened a workshop to discuss a conceptual framework for identifying and genetically testing previously diagnosed but unreferred patients with ovarian cancer and other unrecognized BRCA1 or BRCA2 mutation carriers to improve the detection of families at risk for breast or ovarian cancer. The concept, designated Traceback, was prompted by the recognition that although BRCA1 and BRCA2 mutations are frequent in women with ovarian cancer, many such women have not been tested, especially if their diagnosis predated changes in testing guidelines. The failure to identify mutation carriers among probands represents a lost opportunity to prevent cancer in unsuspecting relatives through risk-reduction intervention in mutation carriers and to provide appropriate reassurances to noncarriers. The Traceback program could provide an important opportunity to reach families from racial, ethnic, and socioeconomic groups who historically have not sought or been offered genetic counseling and testing and thereby contribute to a reduction in health disparities in women with germline BRCA mutations. To achieve an interdisciplinary perspective, the workshop assembled international experts in genetics, medical and gynecologic oncology, clinical psychology, epidemiology, genomics, cost-effectiveness modeling, pathology, bioethics, and patient advocacy to identify factors to consider when undertaking a Traceback program. This report highlights the workshop deliberations with the goal of stimulating research and providing a framework for pilot studies to assess the feasibility and ethical and logistical considerations related to the development of best practices for implementation of Traceback studies.

Original languageEnglish (US)
Pages (from-to)2329-2337
Number of pages9
JournalJournal of Clinical Oncology
Volume35
Issue number20
DOIs
StatePublished - Jul 10 2017

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Genetic Counseling
Ovarian Neoplasms
Mutation
Education
Patient Advocacy
Clinical Psychology
Neoplasms
Bioethics
Medical Oncology
National Cancer Institute (U.S.)
Germ-Line Mutation
Genetic Testing
Risk Reduction Behavior
Genomics
Practice Guidelines
Ethnic Groups
Cost-Benefit Analysis
Epidemiology
Guidelines
Pathology

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Cite this

Traceback : A proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach. / Samimi, Goli; Caga-Anan, Charlisse F.; Dean, Michael; Mechanic, Leah E.; Minasian, Lori M.; Sherman, Mark E.; Brody, Lawrence C.; Bernardini, Marcus Q.; Lheureux, Stephanie; Shaw, Patricia A.; Kwon, Janice S.; Campbell, Ian G.; James, Paul A.; Takenaka, Masataka; Bowtell, David D.; Chenevix-Trench, Georgia; Friedlander, Michael; Ramus, Susan J.; Couch, Fergus J; De Hullu, Joanne A.; Harmsen, Marline G.; Domchek, Susan M.; Drapkin, Ronny; Mai, Phuong L.; Feigelson, Heather Spencer; Gaudet, Mia M.; Hurley, Karen; Robson, Mark E.; Lacbawan, Felicitas; Slavin, Thomas P.; Myers, Evan R.; Rezende, Lisa F.; Swisher, Elizabeth M.

In: Journal of Clinical Oncology, Vol. 35, No. 20, 10.07.2017, p. 2329-2337.

Research output: Contribution to journalArticle

Samimi, G, Caga-Anan, CF, Dean, M, Mechanic, LE, Minasian, LM, Sherman, ME, Brody, LC, Bernardini, MQ, Lheureux, S, Shaw, PA, Kwon, JS, Campbell, IG, James, PA, Takenaka, M, Bowtell, DD, Chenevix-Trench, G, Friedlander, M, Ramus, SJ, Couch, FJ, De Hullu, JA, Harmsen, MG, Domchek, SM, Drapkin, R, Mai, PL, Feigelson, HS, Gaudet, MM, Hurley, K, Robson, ME, Lacbawan, F, Slavin, TP, Myers, ER, Rezende, LF & Swisher, EM 2017, 'Traceback: A proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach', Journal of Clinical Oncology, vol. 35, no. 20, pp. 2329-2337. https://doi.org/10.1200/JCO.2016.70.3439
Samimi, Goli ; Caga-Anan, Charlisse F. ; Dean, Michael ; Mechanic, Leah E. ; Minasian, Lori M. ; Sherman, Mark E. ; Brody, Lawrence C. ; Bernardini, Marcus Q. ; Lheureux, Stephanie ; Shaw, Patricia A. ; Kwon, Janice S. ; Campbell, Ian G. ; James, Paul A. ; Takenaka, Masataka ; Bowtell, David D. ; Chenevix-Trench, Georgia ; Friedlander, Michael ; Ramus, Susan J. ; Couch, Fergus J ; De Hullu, Joanne A. ; Harmsen, Marline G. ; Domchek, Susan M. ; Drapkin, Ronny ; Mai, Phuong L. ; Feigelson, Heather Spencer ; Gaudet, Mia M. ; Hurley, Karen ; Robson, Mark E. ; Lacbawan, Felicitas ; Slavin, Thomas P. ; Myers, Evan R. ; Rezende, Lisa F. ; Swisher, Elizabeth M. / Traceback : A proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach. In: Journal of Clinical Oncology. 2017 ; Vol. 35, No. 20. pp. 2329-2337.
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AU - Mechanic, Leah E.

AU - Minasian, Lori M.

AU - Sherman, Mark E.

AU - Brody, Lawrence C.

AU - Bernardini, Marcus Q.

AU - Lheureux, Stephanie

AU - Shaw, Patricia A.

AU - Kwon, Janice S.

AU - Campbell, Ian G.

AU - James, Paul A.

AU - Takenaka, Masataka

AU - Bowtell, David D.

AU - Chenevix-Trench, Georgia

AU - Friedlander, Michael

AU - Ramus, Susan J.

AU - Couch, Fergus J

AU - De Hullu, Joanne A.

AU - Harmsen, Marline G.

AU - Domchek, Susan M.

AU - Drapkin, Ronny

AU - Mai, Phuong L.

AU - Feigelson, Heather Spencer

AU - Gaudet, Mia M.

AU - Hurley, Karen

AU - Robson, Mark E.

AU - Lacbawan, Felicitas

AU - Slavin, Thomas P.

AU - Myers, Evan R.

AU - Rezende, Lisa F.

AU - Swisher, Elizabeth M.

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