Family Communication in Inherited Cardiovascular Conditions in Ireland.
Over 100,000 individuals living in Ireland carry a mutated gene for an inherited cardiac condition (ICC), most of which demonstrate an autosomal dominant pattern of inheritance. First-degree relatives of individuals with these mutations are at a 50 % risk of being a carrier: disclosing genetic information to family members can be complex. This study explored how families living in Ireland communicate genetic information about ICCs and looked at the challenges of communicating information, factors that may affect communication and what influence this had on family relationships. Face to face interviews were conducted with nine participants using an approved topic guide and results analysed using thematic analysis. The participants disclosed that responsibility to future generations, gender, proximity and lack of contact all played a role in family communication. The media was cited as a source of information about genetic information and knowledge of genetic information tended to have a positive effect on families. Results from this study indicate that individuals are willing to inform family members, particularly when there are children and grandchildren at risk, and different strategies are utilised. Furthermore, understanding of genetics is partially regulated not only by their families, but by the way society handles information. Therefore, genetic health professionals should take into account the familial influence on individuals and their decision to attend genetic services, and also that of the media.
Centre for Medical Education, School of Medicine, Institute of Medical Genetics, Cardiff University, Heath Park, Cardiff, CF14 4XW, UK. Sinead.whyte1@nhs.net.|Institute of Medical Genetics, All Wales Medical Genetics Service, University Hospital of Wales, Cardiff, CF14 4XW, UK. Sinead.whyte1@nhs.net.
Sinead
S
Whyte
National Centre for Medical Genetics, Our Lady's Hospital, Crumlin, Dublin 12, Ireland.
Andrew
A
Green
Centre for Medical Education, School of Medicine, Institute of Medical Genetics, Cardiff University, Heath Park, Cardiff, CF14 4XW, UK.
Marion
M
McAllister
Department of Clinical Genetics, Addenbrooke's Hospital NHS Trust, PO Box 134, Cambridge, CB2 0QQ, UK.
Hannah
H
Shipman
D000328:Adult; D002318:Cardiovascular Diseases / Q000151:congenital / Q000175:diagnosis / Q000235:genetics*; D003142:Communication; D030881:Disclosure; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007494:Ireland; D008297:Male; D009154:Mutation
Communication; Family; Genetics; Inherited cardiac conditions