Wienand Isabelle, Rakic Milenko, Shaw David, Elger Bernice
Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
Institut für Bio- und Medizinethik, Universität Basel, Bernoullistrasse 28, Raum 002, -4056, Basel, CH, Switzerland.
J Bioeth Inq. 2018 Jun;15(2):211-218. doi: 10.1007/s11673-018-9853-x. Epub 2018 Apr 16.
This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3). The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients' medical decision-making, as well as the beneficence of hope for patients' well-being, and for progress in research. Second, it shows how philosophical investigations-in particular Descartes-explore the phenomenon of hope and provide medical empirical research with profitable insights and tools.
本文探讨了希望作为患者参与合成生物学疗法首次人体试验的决定因素的重要性。本文聚焦于人类健康与福祉背景下希望的不同方面，并探究患者所表达的各种希望。研究结果基于从稳定型痛风和糖尿病患者收集的访谈数据。访谈中出现了三种希望的概念：确定的希望（H1）；反思性不确定的希望（H2）；自我治疗的希望（H3）。本文的目的有两个。其一，旨在强调希望在患者医疗决策中的重要性，以及希望对患者福祉和研究进展的益处。其二，展示哲学探究——尤其是笛卡尔的探究——如何探索希望现象，并为医学实证研究提供有益的见解和工具。
