Diewertje Houtman, Wendy Geuverink, Isabel Rosalie Arianne Retel Helmrich, Boy Vijlbrief, Martina Cornel, Sam Riedijk
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引用次数: 0
摘要
鉴于人类种系基因编辑(HGGE)可能产生的巨大伦理和社会影响,人们一再表示迫切需要公众和利益相关者的参与(PSE)。在这篇短文中,我们旨在通过强调未来素养的重要性,为广泛而包容的 PSE 提供方向。未来素养是一种想象多样化和多重未来的技能,并以此为视角重新审视当下。在公共教育部 门教育中首先解决 "如果 "的问题,不同的未来就会成为关注的焦点,而从 "是否 "或 "如 何 "的问题入手则会产生一些局限性。未来扫盲还有助于实现社会协调的目标,因为 "如果 "问题可以有多种不同的答案,从而开启对话,探讨不同公众的多种价值观和需求。关于 HGGE 的广泛和包容性 PSE 首先要提出正确的问题。
"What if" should precede "whether" and "how" in the social conversation around human germline gene editing.
Given the potential large ethical and societal implications of human germline gene editing (HGGE) the urgent need for public and stakeholder engagement (PSE) has been repeatedly expressed. In this short communication, we aim to provide directions for broad and inclusive PSE by emphasizing the importance of futures literacy, which is a skill to imagine diverse and multiple futures and to use these as lenses to look at the present anew. By first addressing "what if" questions in PSE, different futures come into focus and limitations that arise when starting with the "whether" or "how" questions about HGGE can be avoided. Futures literacy can also aid in the goal of societal alignment, as "what if" questions can be answered in many different ways, thereby opening up the conversation to explore a multitude of values and needs of various publics. Broad and inclusive PSE on HGGE starts with asking the right questions.
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.