Cupp Meghan A, Adams Mary, Heys Michelle, Lakhanpaul Monica, Alexander Emma C, Milner Yasmin, Huq Tausif, Peachey Meradin, Shah Lakmini, Mirza Iram Shazia, Manikam Logan
UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1DP, UK.
Aceso Global Health Consultants Limited, 3 Abbey Terrace, London, SE2 9EY, UK.
J Community Genet. 2020 Apr;11(2):225-234. doi: 10.1007/s12687-019-00429-4. Epub 2019 Jul 16.
Consanguineous unions are relationships between blood relatives. This study explores the perceptions of consanguineous unions and risk of childhood disability and illness through the reported views and experiences of women in an ethnically diverse London community. This qualitative study utilised group discussions to elicit women's views and experiences. Field notes were recorded by independent note-takers in four group discussions. Field notes were coded manually and independently by two researchers who identified common themes for thematic analysis. Thirty-six women attended, of whom 20 identified as Asian Pakistani. Identified themes included variation in participants' views of consanguineous unions and associated health risks, the value of informed decisions and preferences for information distribution. Although participants had diverse opinions and experiences, they considered risk awareness to be vital for encouraging informed decisions in younger generations. This study highlights the importance of involving the community in efforts to increase awareness around consanguineous unions and genetic risk, emphasising the need for enabling educated choices and the value of co-developing educational efforts with the community.
近亲联姻是指血亲之间的关系。本研究通过伦敦一个种族多样的社区中女性的报告观点和经历，探讨了对近亲联姻的看法以及儿童残疾和患病的风险。这项定性研究利用小组讨论来引出女性的观点和经历。在四次小组讨论中，由独立的记录员记录现场笔记。两名研究人员对手动记录的现场笔记进行独立编码，确定共同主题以进行主题分析。三十六名女性参加了讨论，其中20人认定为亚洲巴基斯坦人。确定的主题包括参与者对近亲联姻的看法和相关健康风险的差异、知情决策的价值以及对信息传播方式的偏好。尽管参与者有不同的意见和经历，但他们认为风险意识对于鼓励年轻一代做出知情决策至关重要。本研究强调了让社区参与提高对近亲联姻和遗传风险认识的努力的重要性，强调了促成明智选择的必要性以及与社区共同开展教育工作的价值。
