Researchers are exploring the use of gene-editing technologies to prevent and/or treat genetic conditions in humans. Stakeholder views, including those of patient and family populations, are important in the ongoing bioethical discussion. We conducted 27 semi-structured interviews with parents of people with trisomy 21 (T21; N = 10), trisomy 18 (T18; N = 8), and trisomy 13 (T13; N = 9)-conditions not previously studied in regard to attitudes toward hypothetical gene editing. While many discussions focus on the morality of gene editing, parents in our study focused on quality of life and concerns about changing their children's identity. All participants prioritized ameliorating life-threatening health issues when those were present; many also emphasized increasing their children's communication and cognitive ability. These results suggest that patient populations with the lived experience of genetic conditions have unique concerns that may differ from broader discourse.

中文翻译：

---

对常染色体非整倍体患者父母对基因编辑技术的假设使用的态度。

研究人员正在探索使用基因编辑技术来预防和/或治疗人类遗传疾病。利益相关者的观点，包括患者和家人的观点，在正在进行的生物伦理学讨论中很重要。我们对21三体性（T21; N = 10），18三体性（T18; N = 8）和13三体性（T13; N = 9）的人的父母进行了27次半结构化访谈-以前没有研究过的条件对假设的基因编辑的态度。尽管许多讨论集中在基因编辑的道德性上，但我们研究中的父母侧重于生活质量和对改变孩子身份的关注。所有参与者都优先考虑缓解威胁生命的健康问题；许多人还强调提高孩子的沟通和认知能力。