Institute for Health and Social Policy, McGill University, Montreal, Canada.
Department of Family Medicine, McMaster Program for Education Research, Innovation and Theory, McMaster University, Hamilton, Canada.
BMC Med Ethics. 2020 Feb 10;21(1):15. doi: 10.1186/s12910-020-0455-x.
The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.
We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place.
We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.
Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.
非侵入性产前检测胎儿非整倍体的临床应用正在改变许多国家的产前筛查格局。由于它是非侵入性的、安全的,并且可以早期发现异常,NIPT 迅速发展,目前在世界上大多数国家都有商业应用。随着 NIPT 在全球范围内的引入,其临床实施应考虑各种挑战,包括周围社会和文化背景的作用。我们对黎巴嫩和魁北克的医疗保健专业人员进行了定性研究,作为案例研究,以突出文化背景的相关性,并探讨在伦理上实施 NIPT 时应考虑的关注点。
我们对来自两国的 20 名从事产前筛查和后续诊断检测的医疗保健专业人员(HCPs)进行了半结构化访谈,包括妇产科医生、护士、医学遗传学家和遗传咨询师。我们的目的是:1)探讨 HCPs 对 NIPT 提出的问题的看法和观点;2)阐明在两个不同背景(黎巴嫩和魁北克)中引入相同技术(NIPT)所带来的共同和不同挑战,这些挑战受到现有文化规范和法律政策的影响。
我们确定了 NIPT 伦理实施的挑战。一些挑战在两个背景下都存在,包括财务/经济、社会和组织/教育方面的挑战。其他挑战则是特定于每个背景的。例如,黎巴嫩面临的挑战包括堕胎政策和经济利益,而在魁北克,挑战包括残疾权利协会的游说以及获得 NIPT 的地理途径。
我们的研究结果强调,在制定可以指导 NIPT 伦理实施的框架时,需要考虑与各种文化背景相关的具体问题。此外,研究结果表明,医疗保健专业人员的教育和培训仍然至关重要,以便以支持孕妇和夫妇选择的方式提供 NIPT 咨询。