Abma Tineke A, Voskes Yolande, Widdershoven Guy
Bioethics. 2017 Feb;31(2):144-152. doi: 10.1111/bioe.12319.
In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct (not merely the results) of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare.
在本文中,我们论述了生物伦理学研究的社会价值,并展示了一种参与式方法如何能够为广大利益相关者群体带来社会影响,使他们参与到共同的道德学习过程中。参与式生物伦理学认识到,与利益相关者共同开展的研究更有可能对医疗实践产生影响。这些方法旨在让多个利益相关者和感兴趣的合作伙伴参与到整个研究过程中,包括构思和研究问题的提出,以便研究成果能够根据利益相关者的兴趣、背景以及他们所设想的影响类型进行调整。重点在于通过研究的开展(而不仅仅是研究结果)来实现社会变革,并且人们认为利益相关者参与研究过程将提升他们改变自身实践的内在动力。参与式生物伦理学研究的另一个显著特征是,其核心规范承诺在于反思和对话,而非特定的实质性伦理方法。在反思和对话中,强调包容性和知识的共同生成。此外,实证研究和规范研究相结合,并且有意尝试让那些原本处于边缘地位的观点发声。这提供了一种社会影响模式,不仅适用于生物伦理学研究,也适用于医疗保健研究的其他领域。我们将通过一个案例展示参与式生物伦理学研究方法的优点。该案例涉及减少荷兰精神卫生保健中的强制手段,特别是隔离措施。