Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers. Issue 4 (April 2021)

• Record Type: Journal Article
• Authors: Dean, Marleah; Tezak, Ann L.; Johnson, Sabrina; Pierce, Joy K.; Weidner, Anne; Clouse, Kate; Pal, Tuya; Cragun, Deborah
• Is Part Of: Patient education and counseling. Volume 104:Issue 4(2021)
• Page Start: 720
• Page End: 725
• Publication Date: 2021-04
• Subjects: Cancer genetic test results -- Family sharing -- Motivators -- Barriers -- Challenges; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2020.12.019
• Languages: English
• ISSNs: 0738-3991

Abstract

Graphical abstract: Highlights: Regardless of genes, women experienced the same motivators and challenges/barriers. New motivators included: written resources and contextualizing cancer in the family. New challenges included: complexities of information and personal reactions. Results provide preliminary information to improve family sharing interventions. Abstract: Objective: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). Methods: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in a BRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers identified by participants when sharing their GTR with FM. Results: Motivators to sharing personal GTR with FM included: health protection and prevention; moral obligation; decisional empowerment; familial ties; written resources; and contextualization for a familial cause for cancer. Challenges/barriers to family sharing included: concern for FM reactions; complexities of information; lack of closeness; perceived relevance; and emotional impact. Conclusions: All motivators and challenges/barriers were identified across BRCA and non- BRCA carriers, demonstrating commonalities in family sharing of GTR among high- to moderate-penetrance hereditary BC (breast cancer) genes. Despite challenges/barriers, participants disclosed their GTR with most close FM, yet restrictions in communication and/or strain on the timing, manner of disclosing, and strategies used varied across certain FM. Practice implications: These findings offer healthcare providers and researchers preliminary practical implications for broadly improving family sharing interventions across P/LP variants in BC risk genes by demonstrating important elements to include in family sharing letters.