41 65

Cited 0 times in

Modes of responsibility in disclosing cancer genetic test results to relatives: An analysis of Swiss and Korean narrative data

Authors
 Monica Aceti  ;  Maria Caiata-Zufferey  ;  Carla Pedrazzani  ;  Reka Schweighoffer  ;  Soo Yeon Kim  ;  Vasiliki Baroutsou  ;  Maria C Katapodi  ;  Sue Kim  ;  CASCADE and K-CASCADE Consortia 
Citation
 PATIENT EDUCATION AND COUNSELING, Vol.123 : 108202, 2024-06 
Journal Title
PATIENT EDUCATION AND COUNSELING
ISSN
 0738-3991 
Issue Date
2024-06
MeSH
Family ; Female ; Genetic Predisposition to Disease* ; Genetic Testing ; Humans ; Neoplasms* / diagnosis ; Neoplasms* / genetics ; Republic of Korea ; Switzerland
Keywords
Cascade genetic testing ; Confidentiality ; Family communication ; HBOC ; Management of hereditary cancer risk
Abstract
Objective: We examined how responsibility (the “duty to inform relatives about genetic testing results”) is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. Methods: In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons. Results: We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives’ decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms. Conclusion: Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information. Practice implications: Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families. Trial registration number: NCT 04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020) © 2024 The Authors
Files in This Item:
T202402378.pdf Download
DOI
10.1016/j.pec.2024.108202
Appears in Collections:
3. College of Nursing (간호대학) > Dept. of Nursing (간호학과) > 1. Journal Papers
Yonsei Authors
Kim, Sue(김수) ORCID logo https://orcid.org/0000-0003-3785-2445
URI
https://ir.ymlib.yonsei.ac.kr/handle/22282913/199108
사서에게 알리기
  feedback

qrcode

Items in DSpace are protected by copyright, with all rights reserved, unless otherwise indicated.

Browse

Links