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首页> 外文OA文献 >The fifth principle: renegotiable ethical frameworks! A commentary to Goodyear-Smith and colleagues’ article on ‘Co-design and implementation research: challenges and solutions for ethics committees published in BMC Medical Ethics (request for waiver of publication fee denied)
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The fifth principle: renegotiable ethical frameworks! A commentary to Goodyear-Smith and colleagues’ article on ‘Co-design and implementation research: challenges and solutions for ethics committees published in BMC Medical Ethics (request for waiver of publication fee denied)

机译：第五条原则：可商量的道德框架！对固特异-史密斯及其同事在“共同设计和实施研究：伦理委员会在BMC Medical Ethics中发表的挑战和解决方案”的文章的评论（要求免除出版费）

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Goodyear-Smith and colleagues rightfully discuss the many challenges encountered by researchers when working collaboratively with the target groups they are interested in, in terms of how to achieve and register informed consent and guarantee a research procedure that minimizes harm and maximizes benefits for people involved. They propose four important principles to try and bridge those challenges including 1. ensuring acknowledgement and recognition for a diversity of research in institutional review board members, where necessary through educational initiatives; 2. the establishment of ground rules for participatory research applications on a more national level; 3. acknowledgement of the benefits of power-sharing in the co-design process and giving credit to measures that support this goal when researchers succeed in making those explicit in their applications; 4. stimulate and engage in learning processes related to the emergent area of ethical concerns in co-creative or participatory research. While we see value in each of these recommendation, the target group itself remains largely absent in many of the suggestions made. To a large extent it is assumed that when we optimize processes and develop a learning curve in the ethical board members and who knows, the researchers as well, then the major ethical obstacles that we encounter in the field will be removed. We often tend to forget that we, researchers, are being trained to understand the impact of research, to incorporate what it means to be analyzing and interpreting data and how this then further influences the way we communicate about our research. In a fast digitalizing society the concept 'data' has shifted from numbers and narratives that could easily be anonymized to protect the privacy of participants to visual data in which participants may or may not be portrayed. Our co-creators are no longer the people that work with us behind the screen but become part of the tangible set of instruments we use to convey our message and disseminate online: still and moving images, sounds, oral history etc. This makes me wonder whether none of the drop-out or Roma youngsters, girls suffering from anorexia or teenagers addicted to drugs or any of the other vulnerable populations we worked with in the past would change their mind, wanting to pull back their informed consent. The authors claim that much of the work in collaborative research is emergent and difficult to be protocoled, that we need to allow ethical board members a learning curve concerning ethical issues in such research. As a fifth principle, should we not allow our participants to renegotiate their informed consent for how research findings are used and disseminated within and beyond the projects' deadlines and develop a strategy that allows them to do so?
机译：固特异-史密斯（Goodyear-Smith）及其同事正确地讨论了研究人员与他们感兴趣的目标群体合作时所遇到的许多挑战，包括如何获得和注册知情同意并保证研究程序最大程度地减少对相关人员的伤害和利益。他们提出了试图克服这些挑战的四项重要原则，包括：1.确保通过必要的教育举措，承认和认可机构审查委员会成员的各种研究； 2.为更广泛的国家层面的参与性研究应用制定基本规则； 3.承认共享设计在协同设计过程中的好处，并赞扬当研究人员成功地将其明确应用时支持该目标的措施； 4.在共同创新或参与式研究中，激发并参与与伦理关注的新兴领域相关的学习过程。尽管我们在每项建议中都看到了价值，但目标群体本身在许多建议中仍然不存在。在很大程度上，可以认为，当我们优化流程并在道德委员会成员之间建立一条学习曲线时，谁也知道研究人员，那么我们在该领域遇到的主要道德障碍将被消除。我们经常会忘记，我们的研究人员正在接受培训，以了解研究的影响，纳入分析和解释数据的含义以及随后如何进一步影响我们就研究进行交流的方式。在快速数字化的社会中，“数据”的概念已经从可以轻易匿名化的数字和叙述形式转变为保护参与者的隐私，而不再是可能描绘参与者的视觉数据。我们的共同创造者不再是与我们一起在屏幕后面工作的人，而是成为我们用来传达信息和在线传播的有形工具的一部分：静止和动态图像，声音，口述历史等。这让我感到奇怪我们过去与之合作的辍学者，罗姆族年轻人，厌食症的女孩，吸毒成瘾的青少年或其他弱势群体中的任何一个都不会改变主意，想要撤回他们的知情同意。作者声称，合作研究中的许多工作是新兴的，难以协议，因此我们需要允许道德委员会成员了解有关此类研究中道德问题的学习曲线。作为第五项原则，我们是否不应该让我们的参与者就在项目的最后期限之内和之后如何使用和传播研究结果的问题，重新征得他们的知情同意，并制定一项允许他们这样做的策略？

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    Hannes Karin;

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  • 年度 2015
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