Attitudes Toward Hypothetical Uses of Gene-Editing Technologies in Parents of People with Autosomal Aneuploidies
Attitudes Toward Hypothetical Uses of Gene-Editing Technologies in Parents of People with Autosomal Aneuploidies
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DOI：
10.1089/crispr.2019.0021
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发表时间：
2019-10-01
期刊：
影响因子：
3.7
通讯作者：
Ormond, Kelly E.
中科院分区：
文献类型：
--
作者：
Beckman, Erika Snure;Deuitch, Natalie;Ormond, Kelly E.
研究人员正在探索使用基因编辑技术来预防和/或治疗人类的遗传疾病。利益相关者的观点，包括患者和家庭群体的观点，在正在进行的生物伦理讨论中非常重要。我们对患有21三体（T21; N = 10），18三体（T18; N = 8）和13三体（T13; N = 9）的人的父母进行了27次半结构化访谈-以前没有研究过对假设基因编辑的态度。虽然许多讨论都集中在基因编辑的道德上，但我们研究中的父母关注的是生活质量和对改变孩子身份的担忧。所有参与者都优先考虑改善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。这些结果表明，有遗传疾病生活经历的患者群体有独特的关注点，可能与更广泛的讨论不同。
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.