Hillman Alexandra
School of Social Sciences, WISERD, Cardiff University, 45 Park Place, Cardiff CF10 3BB, UK.
Soc Theory Health. 2017 Feb;15(1):44-65. doi: 10.1057/s41285-016-0018-x. Epub 2016 Sep 21.
This article highlights the contribution of ethnography and qualitative sociology to the ethical challenges that frame the diagnosis of dementia. To illustrate this contribution, the paper draws on an ethnographic study of UK memory clinics carried out between 2012 and 2014. The ethnographic data, set alongside other studies and sociological theory, contest the promotion of a traditional view of autonomy; the limiting of the point of ethical interest to a distinct moment of diagnosis disclosure; and the failure to recognise risk and uncertainty in the building of clinical 'facts' and their communication. In addressing these specific concerns, this article contributes to the wider debate over the relationship between sociology and bioethics (medical ethics). At the heart of these debates lies more fundamental questions: how can we best understand and shape moral decision-making and ethics that guide behaviour in medical practice, and what should be the guiding ideas, concepts and methods to inform ethics in the clinic? Using the case of dementia diagnosis, this article illustrates the benefits of an ethnographic approach, not just for understanding this ethical problem but also for exploring if and how a more empirically informed ethics can help shape healthcare practices for the better.
本文强调了民族志和定性社会学对构成痴呆症诊断伦理挑战的贡献。为了说明这一贡献,本文借鉴了2012年至2014年期间对英国记忆诊所进行的一项民族志研究。这些民族志数据与其他研究及社会学理论相结合,对传统自主性观点的推广提出了质疑;对将伦理关注的重点局限于诊断披露这一特定时刻提出了质疑;以及对在构建临床“事实”及其传播过程中未能认识到风险和不确定性提出了质疑。在解决这些具体问题时,本文为关于社会学与生物伦理学(医学伦理学)之间关系的更广泛辩论做出了贡献。这些辩论的核心存在更根本的问题:我们如何才能最好地理解和塑造指导医疗实践行为的道德决策和伦理,以及在临床中为伦理提供信息的指导思想、概念和方法应该是什么?以痴呆症诊断为例,本文说明了民族志方法的益处,不仅在于理解这一伦理问题,还在于探索更基于实证的伦理是否以及如何能够有助于改善医疗保健实践。