Literature DB >> 31912597

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer.

Claire C Conley1, Dana Ketcher1, Maija Reblin1, Monica L Kasting2, Deborah Cragun3, Jongphil Kim4, Kimlin Tam Ashing5, Cheryl L Knott6, Chanita Hughes-Halbert7, Tuya Pal8, Susan T Vadaparampil1.   

Abstract

Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population-based study. At 12 months post-testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2-positive women were significantly less likely to disclose results to their daughters (ORBRCA positive  = 0.25, 95% CI = 0.07-0.94, p = .041) by 12 months post-genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing-to inform patients and their family about cancer risk information-is not being realized. To increase breast cancer preventive care among high-risk Black women, the oncology care team should prepare Black BRCA1/2-positive women to share genetic test results with family members and, in particular, their daughters.
© 2020 National Society of Genetic Counselors.

Entities:  

Keywords:  BRCA1/2 pathogenic variant; breast cancer; communication; disclosure; disparities; family; genetic counseling; genetic testing

Mesh:

Year:  2020        PMID: 31912597      PMCID: PMC7343233          DOI: 10.1002/jgc4.1196

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  66 in total

Review 1.  Family communication about genetic risk: the little that is known.

Authors:  Brenda J Wilson; Karen Forrest; Edwin R van Teijlingen; Lorna McKee; Neva Haites; Eric Matthews; Sheila A Simpson
Journal:  Community Genet       Date:  2004

2.  Genetic Test Results and Disclosure to Family Members: Qualitative Interviews of Healthcare Professionals' Perceptions of Ethical and Professional Issues in France.

Authors:  Diane D' Audiffret Van Haecke; Sandrine de Montgolfier
Journal:  J Genet Couns       Date:  2015-10-19       Impact factor: 2.537

Review 3.  Process and outcome in communication of genetic information within families: a systematic review.

Authors:  Clara L Gaff; Angus J Clarke; Paul Atkinson; Stephanie Sivell; Glyn Elwyn; Rachel Iredale; Hazel Thornton; Joanna Dundon; Chris Shaw; Adrian Edwards
Journal:  Eur J Hum Genet       Date:  2007-07-04       Impact factor: 4.246

4.  Communicating inherited genetic risk between parent and child: a meta-thematic synthesis.

Authors:  Emma Rowland; Alison Metcalfe
Journal:  Int J Nurs Stud       Date:  2012-09-29       Impact factor: 5.837

5.  National Estimates of Genetic Testing in Women With a History of Breast or Ovarian Cancer.

Authors:  Christopher P Childers; Kimberly K Childers; Melinda Maggard-Gibbons; James Macinko
Journal:  J Clin Oncol       Date:  2017-08-18       Impact factor: 44.544

6.  Disclosure to the family of breast/ovarian cancer genetic test results: patient's willingness and associated factors.

Authors:  C Julian-Reynier; F Eisinger; F Chabal; C Lasset; C Noguès; D Stoppa-Lyonnet; P Vennin; H Sobol
Journal:  Am J Med Genet       Date:  2000-09-04

Review 7.  Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis.

Authors:  Dejana Braithwaite; Jon Emery; Fiona Walter; A Toby Prevost; Stephen Sutton
Journal:  J Natl Cancer Inst       Date:  2004-01-21       Impact factor: 13.506

8.  Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing.

Authors:  K R Smith; J A West; R T Croyle; J R Botkin
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  1999-04       Impact factor: 4.254

9.  What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2.

Authors:  Inez Adams; Juleen Christopher; Karen Patricia Williams; Vanessa B Sheppard
Journal:  J Cancer Educ       Date:  2015-06       Impact factor: 2.037

10.  Communication of genetic test results to family and health-care providers following disclosure of research results.

Authors:  Kristi D Graves; Pamela S Sinicrope; Mary Jane Esplen; Susan K Peterson; Christi A Patten; Jan Lowery; Frank A Sinicrope; Sandra K Nigon; Joyce Borgen; Sherri Sheinfeld Gorin; Louise A Keogh; Noralane M Lindor
Journal:  Genet Med       Date:  2013-10-03       Impact factor: 8.822

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  11 in total

Review 1.  Experiences of individuals with a variant of uncertain significance on genetic testing for hereditary cancer risks: a mixed method systematic review.

Authors:  Danielle Gould; Rachel Walker; Grace Makari-Judson; Memnun Seven
Journal:  J Community Genet       Date:  2022-07-12

2.  Do research participants share genomic screening results with family members?

Authors:  Julia Wynn; Hila Milo Rasouly; Tania Vasquez-Loarte; Akilan M Saami; Robyn Weiss; Sonja I Ziniel; Paul S Appelbaum; Ellen Wright Clayton; Kurt D Christensen; David Fasel; Robert C Green; Heather S Hain; Margaret Harr; Christin Hoell; Iftikhar J Kullo; Kathleen A Leppig; Melanie F Myers; Joel E Pacyna; Emma F Perez; Cynthia A Prows; Alanna Kulchak Rahm; Gemme Campbell-Salome; Richard R Sharp; Maureen E Smith; Georgia L Wiesner; Janet L Williams; Carrie L Blout Zawatsky; Ali G Gharavi; Wendy K Chung; Ingrid A Holm
Journal:  J Genet Couns       Date:  2021-10-19       Impact factor: 2.717

Review 3.  Health equity in the implementation of genomics and precision medicine: A public health imperative.

Authors:  Muin J Khoury; Scott Bowen; W David Dotson; Emily Drzymalla; Ridgely F Green; Robert Goldstein; Katherine Kolor; Leandris C Liburd; Laurence S Sperling; Rebecca Bunnell
Journal:  Genet Med       Date:  2022-04-28       Impact factor: 8.864

4.  Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.

Authors:  Claire C Conley; Amy K Otto; Glynnis A McDonnell; Kenneth P Tercyak
Journal:  Transl Behav Med       Date:  2021-11-30       Impact factor: 3.046

5.  Disparities in Genetic Testing and Care among Black women with Hereditary Breast Cancer.

Authors:  Sonya Reid; Sydney Cadiz; Tuya Pal
Journal:  Curr Breast Cancer Rep       Date:  2020-05-19

Review 6.  An overview of genetic services delivery for hereditary breast cancer.

Authors:  Sonya Reid; Lucy B Spalluto; Katie Lang; Anne Weidner; Tuya Pal
Journal:  Breast Cancer Res Treat       Date:  2022-01-26       Impact factor: 4.624

7.  Prevalence of Clinically Relevant Germline BRCA Variants in a Large Unselected South African Breast and Ovarian Cancer Cohort: A Public Sector Experience.

Authors:  Nerina C Van der Merwe; Herkulaas MvE Combrink; Kholiwe S Ntaita; Jaco Oosthuizen
Journal:  Front Genet       Date:  2022-04-08       Impact factor: 4.772

8.  Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.

Authors:  Taylor M Dattilo; Keagan G Lipak; Olivia E Clark; Alison Gehred; Amani Sampson; Gwendolyn Quinn; Kristin Zajo; Megan E Sutter; Meghan Bowman-Curci; Molly Gardner; Cynthia A Gerhardt; Leena Nahata
Journal:  J Adolesc Young Adult Oncol       Date:  2020-09-08       Impact factor: 2.223

9.  Barriers to family history knowledge and family communication among LGBTQ+ individuals in the context of hereditary cancer risk assessment.

Authors:  Bradley A Rolf; Jennifer L Schneider; Laura M Amendola; James V Davis; Kathleen F Mittendorf; Mark A Schmidt; Gail P Jarvik; Benjamin S Wilfond; Katrina A B Goddard; Jessica Ezzell Hunter
Journal:  J Genet Couns       Date:  2021-07-23       Impact factor: 2.537

10.  Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years.

Authors:  Carla Pedrazzani; Chang Ming; Nicole Bürki; Maria Caiata-Zufferey; Pierre O Chappuis; Debra Duquette; Karl Heinimann; Viola Heinzelmann-Schwarz; Rossella Graffeo-Galbiati; Sofia D Merajver; Kara J Milliron; Christian Monnerat; Olivia Pagani; Manuela Rabaglio; Maria C Katapodi
Journal:  Cancers (Basel)       Date:  2021-12-13       Impact factor: 6.639

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