Wendy P Geuverink, Diewertje Houtman, Isabel R A Retel Helmrich, Sophie van Baalen, Britta C van Beers, Carla G van El, Lidewij Henneman, Michelle D Kasprzak, Danielle Arets, Sam R Riedijk
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引用次数: 0
Abstract
Given the potentially large ethical and societal implications of human germline gene editing (HGGE) the urgent need for public and stakeholder engagement (PSE) has been repeatedly expressed. However, the explicit goals of such PSE efforts often remain poorly defined. In this program report, we outline the goals of our Dutch project called De DNA dialogen (The DNA dialogues). We believe that setting explicit goals in advance is essential to enable meaningful PSE efforts. Moreover, it enables the evaluation of our engagement efforts. The following four goals, which result from intensive consultations among the transdisciplinary projects' consortium members and based on the literature, form the foundation for how we will engage the public and stakeholders in deliberation about HGGE: 1) Enable publics and stakeholders to deliberate on "what if" questions, before considering "whether" and "how" questions regarding HGGE, 2) Investigate agreement and disagreement in values and beliefs regarding HGGE in order to agree and disagree more precisely, 3) Involve diverse publics with various perspectives, with a focus on those that are typically underrepresented in PSE, 4) Enable societally aligned policy making by providing policymakers, health care professionals and legal experts insight into how values are weighed and ascribed meaning in the context of HGGE by various publics, and how these values relate to the principles of democratic rule of law and fundamental rights. The effort to describe our goals in detail may serve as an example and can inform future initiatives striving for open science and open governance in the context of PSE.
鉴于人类种系基因编辑(HGGE)可能会产生巨大的伦理和社会影响,人们一再表示迫切需要让公众和利益相关者参与进来(PSE)。然而,此类 PSE 工作的明确目标往往仍未得到很好的界定。在本计划报告中,我们概述了荷兰项目 De DNA dialogen(DNA 对话)的目标。我们认为,提前设定明确的目标对于开展有意义的 PSE 工作至关重要。此外,它还有助于对我们的参与工作进行评估。以下四个目标是跨学科项目联合体成员之间深入磋商的结果,并以文献为基础,构成了我们如何让公众和利益相关者参与讨论全球地质基因组研究的基础:1) 让公众和利益相关者在考虑有关政府间地质学小组的 "是否 "和 "如何 "的问题之前,先讨论 "如果 "的问题,2) 调查有关政府间地质学小组的价值观和信念方面的一致和分歧,以便更准确地达成一致和分歧,3) 让具有各种观点的不同公众参与进来、4) 让政策制定者、医疗保健专业人员和法律专家深入了解在性别平等问题上不同公众是如何权衡价值观并赋予其意义的,以及这些价值观与民主法治原则和基本权利之间的关系,从而制定出符合社会发展的政策。详细描述我们目标的努力可作为一个范例,并可为未来在 PSE 背景下努力实现开放科学和开放治理的倡议提供参考。
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.