Geuverink Wendy P, Houtman Diewertje, Retel Helmrich Isabel R A, van Baalen Sophie, van Beers Britta C, van El Carla G, Henneman Lidewij, Kasprzak Michelle D, Arets Danielle, Riedijk Sam R
Department of Human Genetics, Amsterdam UMC, Location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Amsterdam Reproduction and Development Research Institute, Amsterdam, the Netherlands.
J Community Genet. 2024 Jun;15(3):259-265. doi: 10.1007/s12687-024-00710-1. Epub 2024 May 8.
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.
鉴于人类生殖系基因编辑(HGGE)可能产生重大的伦理和社会影响,人们一再强调迫切需要公众和利益相关者参与(PSE)。然而,此类PSE努力的明确目标往往仍不明确。在本项目报告中,我们概述了我们名为“De DNA dialogen”(DNA对话)的荷兰项目的目标。我们认为,提前设定明确目标对于开展有意义的PSE努力至关重要。此外,这有助于评估我们的参与工作。以下四个目标是跨学科项目联盟成员经过深入磋商并基于文献得出的,它们构成了我们让公众和利益相关者参与HGGE审议的基础:1)在考虑关于HGGE的“是否”和“如何”问题之前,让公众和利益相关者就“如果……会怎样”的问题进行审议;2)调查关于HGGE的价值观和信念上的共识与分歧,以便更精确地达成共识和存在分歧;3)让具有不同观点的多样化公众参与,尤其关注那些在PSE中代表性通常不足的群体;4)通过向政策制定者、医疗保健专业人员和法律专家提供洞见,了解不同公众在HGGE背景下如何权衡价值观并赋予其意义,以及这些价值观如何与民主法治原则和基本权利相关联,从而推动符合社会需求的政策制定。详细描述我们目标的努力可作为一个范例,并能为未来在PSE背景下追求开放科学和开放治理的倡议提供参考。