Ireland-Blake Niamh, Cram Fiona, Dew Kevin, Bacharach Sondra, Snelling Jeanne, Stone Peter, Buchanan Christina, Filoche Sara
Department of Obstetrics, Gynaecology and Women's Health, University of Otago, Wellington, Aotearoa, New Zealand.
Katoa Ltd, Auckland, Aotearoa, New Zealand.
BMC Med Ethics. 2025 Jan 9;26(1):1. doi: 10.1186/s12910-024-01144-7.
Being able to measure informed choice represents a mechanism for service evaluation to monitor whether informed choice is achieved in practice. Approaches to measuring informed choice to date have been based in the biomedical hegemony. Overlooked is the effect of epistemic positioning, that is, how people are positioned as credible knowers in relation to knowledge tested as being relevant for informed choice.
To identify and describe studies that have measured informed choice in the context of prenatal screening and to describe epistemic positioning of pregnant people in these studies.
Online databases to identify papers published from 2005 to 2021. The PRISMA-ScR checklist guided data collection, analysis and reporting. Secondary analysis that considered hermeneutics (e.g., knowledge that was tested, study design) and testimony (e.g., population descriptors) developed a priori.
Twenty-nine studies explored the measurement of informed choice. None reported that pregnant people were involved in the design of the study. Two studies reported pregnant people had some involvement in the design of the measurement. Knowledge tested for informed choice included technical aspects of screening, conditions screened and mathematical concepts. Twenty-seven studies attributed informed choice to population descriptors (e.g., race/ethnicity, age, education). Population descriptors were reified as characteristics of epistemic credibility for informed choice obtained. For example, when compared to a high school qualification, a tertiary qualification was a statistically significant characteristic of informed choice. When compared by race, white people were found to be significantly more likely to make an informed choice. Additional demographic descriptors such as age, language spoken, faith and previous pregnancies were used to further explain differences for informed choice obtained. Explanations about underlying assumptions of population descriptors were infrequent.
Using population descriptors in the biomedical hegemony as explanatory variables for informed choice can position (groups of) people as more, or less, epistemically credible. Such positioning could perpetuate epistemic injustices in practice leading to inequitable access to healthcare. To better uphold (pregnant) people as credible knowers population descriptors should instead be contextual (and contextualising) variables. For example, as indicators of social privilege. Further, making room for ways of knowing that go beyond the biomedical hegemony requires the development of epistemically just 'measures' through intentional, inclusive design.
能够衡量知情选择是一种服务评估机制，用于监测在实际中是否实现了知情选择。迄今为止，衡量知情选择的方法一直基于生物医学霸权。认知定位的影响被忽视了，也就是说，人们如何被定位为与被测试为与知情选择相关的知识相关的可信知晓者。
识别和描述在产前筛查背景下衡量知情选择的研究，并描述这些研究中孕妇的认知定位。
通过在线数据库识别2005年至2021年发表的论文。PRISMA-ScR清单指导数据收集、分析和报告。考虑诠释学（如被测试的知识、研究设计）和证词（如人群描述）的二次分析是预先制定的。
29项研究探讨了知情选择的衡量。没有一项研究报告孕妇参与了研究设计。两项研究报告孕妇在测量设计中有一定参与。为知情选择测试的知识包括筛查的技术方面、筛查的疾病和数学概念。27项研究将知情选择归因于人群描述（如种族/民族、年龄、教育程度）。人群描述被具体化作为获得的知情选择的认知可信度特征。例如，与高中学历相比，大专学历是知情选择的一个统计学上显著的特征。按种族比较时，发现白人做出知情选择的可能性明显更高。其他人口统计学描述，如年龄、所讲语言、信仰和既往妊娠，被用来进一步解释获得的知情选择的差异。关于人群描述潜在假设的解释很少见。
在生物医学霸权中使用人群描述作为知情选择的解释变量，可以将人群（群体）定位为在认知上更可信或更不可信。这种定位可能在实践中延续认知不公正，导致获得医疗保健的不平等。为了更好地将（孕妇）视为可信的知晓者，人群描述应该是情境性（和情境化）变量。例如，作为社会特权的指标。此外，为超越生物医学霸权的认知方式留出空间，需要通过有意的、包容性的设计来开发认知公正的“措施”。
