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: NCT04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020).
Keywords: Cascade genetic testing; Confidentiality; Family communication; HBOC; Management of hereditary cancer risk.
Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.