ELSIcon2022 • Networking Session • Late-breaking Abstracts • May 31, 2022
This study examines the different meanings of responsibility to disclose to family about genetic information regarding hereditary cancer risk in Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. Using qualitative data from the CASCADE and K-CASCADE studies, an international cohort of hereditary breast and ovarian cancer (HBOC) families, we explore and compare the various issues encountered by Korean and Swiss families with a “gene running in the family”, with a particular focus on understanding the representations that underlie disclosure of genetic information.
In-depth qualitative interviews from 22 Korean and 57 Swiss HBOC cases were transcribed verbatim and translated from Korean, French, Italian and Swiss German to English. Preliminary analysis by an interdisciplinary and bi-national team was made with 14 interviews using MaxQDA.
We identified different modalities for sharing information and 4 modes of responsibility related to disclosing to blood relatives: 1. influencer, 2. informative, 3. relayer, and 4. delayer. We identified differences between older Korean women and younger Swiss and Korean women. The former emphasized the notion of nuclear family solidarity, and expressed concerns about potential stigma and blame about carriers of pathogenic variants (4). The latter highlighted prevention benefits as a major pattern of personal responsibility (1) and, paradoxically, referred more frequently the notion of relatives’ free choices and respecting their decision not to commit to genetic testing (2 & 3).
Capturing subtle cultural specificities regarding different meanings of responsibility supports adaptation to cultural diversity and disentangles ethnocentric approaches in genetics research and healthcare practices.