Pedrazzani, Carla; Aceti, Monica; Schweighoffer, Reka; Kaiser-Grolimund, Andrea; Bürki, Nicole; Chappuis, Pierre O; Graffeo, Rossella; Monnerat, Christian; Pagani, Olivia; Rabaglio, Manuela; Katapodi, Maria C; Caiata-Zufferey, Maria (2022). The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer. Journal of personalized medicine, 12(8) MDPI 10.3390/jpm12081249
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Low uptake of genetic services among members of families with hereditary breast and ovarian cancer (HBOC) suggests limitations of proband-mediated communication of genetic risk. This study explored how genetic information proceeds from healthcare providers to probands and from probands to relatives, from the probands' perspectives. Using a grounded-theory approach, we analyzed narrative data collected with individual interviews and focus groups from a sample of 48 women identified as carriers of HBOC-associated pathogenic variants from three linguistic regions of Switzerland. The findings describe the "communication chain", confirming the difficulties of proband-mediated communication. Provider-proband communication is impacted by a three-level complexity in the way information about family communication is approached by providers, received by probands, and followed-up by the healthcare system. Probands' decisions regarding disclosure of genetic risk are governed by dynamic and often contradictory logics of action, interconnected with individual and family characteristics, eventually compelling probands to engage in an arbitrating process. The findings highlight the relevance of probands' involvement in the communication of genetic risk to relatives, suggesting the need to support them in navigating the complexity of family communication rather than replacing them in this process. Concrete actions at the clinical and health system levels are needed to improve proband-mediated communication.
Item Type: |
Journal Article (Original Article) |
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Division/Institute: |
04 Faculty of Medicine > Department of Haematology, Oncology, Infectious Diseases, Laboratory Medicine and Hospital Pharmacy (DOLS) > Clinic of Medical Oncology |
UniBE Contributor: |
Rabaglio, Manuela Elena |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
2075-4426 |
Publisher: |
MDPI |
Language: |
English |
Submitter: |
Pubmed Import |
Date Deposited: |
29 Aug 2022 15:06 |
Last Modified: |
05 Dec 2022 16:23 |
Publisher DOI: |
10.3390/jpm12081249 |
PubMed ID: |
36013197 |
Uncontrolled Keywords: |
HBOC cascade genetic screening counselling genetic risk grounded theory intra-familial communication proband-mediated communication tier 1 genetic condition |
BORIS DOI: |
10.48350/172416 |
URI: |
https://boris.unibe.ch/id/eprint/172416 |
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