英国公共卫生部与胎儿异常筛查项目联合制作。

IF 1.4 Q2 ETHICS
Colette Lloyd, Elizabeth Corcoran, Lynn Murray
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引用次数: 0

摘要

随着新的无细胞DNA (Cf-DNA)产前筛查唐氏综合症测试被引入英国胎儿异常筛查计划,唐氏综合症慈善机构有机会参与其中。随后,我们开始了合作制片的经历,成为少数人的声音。本文探讨了这一过程和我们作为慈善机构的经验。制度和社会结构意味着它很难被听到,并且在程序中注意到大量的偏见。因此,我们的观点经常被考虑,然后被驳回。然而,有时我们的意见被听取了,并且感觉由于我们的参与而产生了一些有价值的变化。最终的作品远没有反映出我们所主张的一切,在英国,我们仍然需要吸取教训,在合作制作的过程中,需要更加重视少数群体的生活经验。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Public Health England and Co-Production with the Fetal Anomaly Screening Programme.

As the new Cell-free DNA (Cf-DNA) prenatal screening test for Down syndrome was being introduced into the UK's fetal anomaly screening program, Down syndrome charities had an opportunity to participate. An experience of co-production where we were the minority voice then followed. This paper explores that process and our experience as a charity. Institutional and societal structures meant that it was difficult to be heard and a significant amount of bias was noted within the program. Consequently, our viewpoints were often considered and then dismissed. However, at times we were listened to, and feel that there were some valuable changes made resulting from our involvement. The end product was far from reflective of all that we stand for, and there are still lessons to be learned in England about the need to place a higher value on minority voices of lived experience in a co-production exercise.

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来源期刊
CiteScore
2.30
自引率
16.70%
发文量
45
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