Public attitudes challenge clinical practice on genetic risk disclosure in favour of healthcare-provided direct dissemination to relatives

Rosén, Anna; Krajc, Mateja; Ehrencrona, Hans; Bajalica‐Lagercrantz, Svetlana

doi:10.1038/s41431-023-01428-3

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2024

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Cited by 2 publications

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Attitudes towards disclosure of familial genetic risk in a Mediterranean island population – A survey of the Maltese population

Mintoff,

Booker,

Debono

et al. 2024

European Journal of Medical Genetics

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Attitudes towards disclosure of familial genetic risk in a Mediterranean island population – A survey of the Maltese population

Mintoff,

Booker,

Debono

et al. 2024

European Journal of Medical Genetics

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Family Leaders Communicate Risk During Cascade Screening after Sudden Cardiac Death in the Young

Dellefave-Castillo,

Hinkamp,

Shah

et al. 2024

Preprint

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Introduction: Relatives of a victim of sudden cardiac death in the young (SCDY) may be at risk for hereditary cardiomyopathies and arrhythmias. Family leaders are often responsible for communicating risk to surviving family at a difficult time. Purpose: Explore barriers and facilitators to communication about cascade screening in families who have lost a family member to SCDY Methods: Semi-structured interviews (n = 14) were conducted with family members of a SCDY decedent. Participants were recruited from the Sudden Arrhythmia Death Syndrome advocacy group. Interviews were conducted until data saturation was reached. Interviews were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Five categories were identified from the interviews: 1. Participants understood fundamental risks but the clinical variability in arrhythmia and cardiomyopathy was difficult to interpret and convey; 2. Family leaders felt some family disregarded risk information; 3. Grief interfered with communication; 4. Communication aids were insufficient stand-alone interventions; 5. Families advocated for a genetic family navigator. Conclusion: The five categories provide practical strategies to improve clinical care and communication for families after a SCDY and emphasize the need for genetic family navigators to facilitate cascade screening.

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Public attitudes challenge clinical practice on genetic risk disclosure in favour of healthcare-provided direct dissemination to relatives

Cited by 2 publications

References 11 publications

Attitudes towards disclosure of familial genetic risk in a Mediterranean island population – A survey of the Maltese population

Attitudes towards disclosure of familial genetic risk in a Mediterranean island population – A survey of the Maltese population

Family Leaders Communicate Risk During Cascade Screening after Sudden Cardiac Death in the Young

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