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瑞士专家对人类基因编辑的看法。

Experts' perspectives on human gene editing in Switzerland.

作者信息

Berlincourt Jade, Gächter Sumanie, Vayena Effy, Ormond Kelly E

机构信息

Health Ethics and Policy Lab, Health Sciences and Technologies Department ETH Zurich, Zurich, Switzerland.

Health Sciences and Technologies Department, ETH Zurich, Zurich, Switzerland.

出版信息

J Community Genet. 2025 Feb;16(1):83-90. doi: 10.1007/s12687-024-00757-0. Epub 2024 Dec 19.

Abstract

Despite many specialized studies on the views of the public or stakeholders who face inherited conditions that may be treatable by HGE, limited studies have focused on experts' views towards Human Gene Editing (HGE). Therefore, in this study we conducted exploratory interviews with 14 experts (scientists, clinicians, social scientists, lawyers) in Switzerland to assess their views towards HGE and how they expect the Swiss public to view HGE. We found general acceptance of Somatic Gene Editing (SGE), but opinions towards Germline Gene Editing (GGE) were more divided. Participants emphasized patient autonomy and informed decision-making in pursuing gene editing treatments, and described a need for regulation, as with any other new therapy. Only a few participants (mostly lawyers and ethicists) described the regulations that currently prohibit GGE in Switzerland. Some expressed concern that restrictive regulations would lead to healthcare outsourcing and medical tourism to other nearby countries, as it has in the past with other restricted technologies. The analysis explored the unique Swiss context that is shaped by cultural diversity, conservative attitudes towards new medical technologies, and a democratic system that engages the public in policy and law making. Given that our findings identify areas of difference from that published in other countries, we emphasize the value in conducting similar research across different countries in order to achieve a global sense of attitudes towards HGE, so that regulations can be tailored to the diverse needs of citizens around the world.

摘要

尽管针对可能可通过人类基因编辑(HGE)治疗的遗传疾病患者或利益相关者的公众观点进行了许多专门研究,但关注专家对人类基因编辑(HGE)看法的研究却很有限。因此,在本研究中,我们对瑞士的14位专家(科学家、临床医生、社会科学家、律师)进行了探索性访谈,以评估他们对HGE的看法以及他们认为瑞士公众会如何看待HGE。我们发现对体细胞基因编辑(SGE)普遍接受,但对生殖系基因编辑(GGE)的看法则更为分歧。参与者强调在寻求基因编辑治疗时患者的自主权和知情决策,并表示与任何其他新疗法一样,需要进行监管。只有少数参与者(主要是律师和伦理学家)描述了瑞士目前禁止GGE的规定。一些人担心严格的规定会导致医疗保健外包和前往其他邻国的医疗旅游,就像过去其他受限技术那样。该分析探讨了由文化多样性、对新医疗技术的保守态度以及让公众参与政策和法律制定的民主制度所塑造的独特瑞士背景。鉴于我们的研究结果确定了与其他国家已发表研究的差异领域,我们强调在不同国家开展类似研究的价值,以便对HGE形成全球态度认知,从而使法规能够适应世界各地公民的不同需求。

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