Experts' perspectives on human gene editing in Switzerland.

IF 1.5 Q4 GENETICS & HEREDITY
Jade Berlincourt, Sumanie Gächter, Effy Vayena, Kelly E Ormond
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引用次数: 0

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.

专家对瑞士人类基因编辑的看法。
尽管有许多关于公众或利益相关者的观点的专门研究,这些人面临可能通过HGE治疗的遗传疾病,但有限的研究集中在专家对人类基因编辑(HGE)的看法上。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,以及他们希望瑞士公众如何看待HGE。我们发现人们普遍接受体细胞基因编辑(SGE),但对生殖系基因编辑(GGE)的看法更为分歧。参与者强调了在进行基因编辑治疗时患者的自主权和知情决策,并描述了与任何其他新疗法一样需要监管。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。一些人表示担心,限制性规定将导致医疗外包和医疗旅游到其他附近国家,就像过去其他受限制的技术一样。该分析探讨了瑞士独特的文化多样性、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。鉴于我们的研究结果确定了与其他国家发表的研究结果存在差异的领域,我们强调在不同国家进行类似研究的价值,以实现全球对HGE的态度,从而使法规能够根据世界各地公民的不同需求进行调整。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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