Kitzinger Celia, Kitzinger Jenny
School of Law, Cardiff University, Cardiff, Wales, UK.
School of Journalism, Media and Culture, Cardiff University, Cardiff, Wales, UK.
Bioethics. 2019 Oct;33(8):896-907. doi: 10.1111/bioe.12583. Epub 2019 Apr 15.
This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology-giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda-imposed by the British Research Excellence Framework- for our actions as scholar-activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research-helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front-line practice, law, and public policy.
本文探讨了我们作为学者、倡导者和行动主义者的角色之间的联系，重点关注我们对处于植物人和微意识状态患者治疗决策的研究。我们描述了我们的工作是如何从个人经历，通过传统社会科学研究，发展到公众参与活动，然后再到倡导和行动主义的。我们反思了在处理研究、倡导和行动主义之间的关系时所面临的挑战，以及这些挑战对我们研究伦理和方法的影响——给出了我们如何与研究参与者合作、撰写案例研究以及将干预措施引入法律辩论的实际例子。我们还讨论了英国卓越研究框架所施加的影响议程对我们作为学者行动主义者的行动的影响。最后，我们探讨了在学术、倡导和行动主义的边界开展实践如何为研究提供信息——有助于将理论与实践相结合、使其更具敏感性并促进理论与实践的互动，从而对数据及其影响进行更有力的分析，并有助于确保研究、理论、生活经验、一线实践、法律和公共政策之间的对话。
