Jämterud Sofia Morberg, Snoek Anke
Department of Thematic Studies, Technology and Social Change, Linköping University, 581 85 Linköping, Sweden.
Department of Ethics, Law and Medical Humanities, Amsterdam University Medical Center, De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands.
Healthcare (Basel). 2023 May 22;11(10):1511. doi: 10.3390/healthcare11101511.
Preconception expanded carrier screening (PECS) informs prospective parents about the risk of conceiving a child with a heritable genetic condition. PECS will also, for many, become an important screening test, and websites will likely play a vital role in providing information on this practice. The aim of this article is to examine rationalities in the information on PECS on Dutch websites. The method used is multimodal critical discourse analysis. This method allows an examination of norms and assumptions in the descriptions, as well as of the positions that are discursively made available. The data consist of publicly available material on websites from two genetics departments in the Netherlands. In the results, we present the three main discourses and subject positions that were identified: risk and the couple as possible mediators of severe conditions; the focus on scientific facts and rational conceivers; and severity of the conditions and the responsible couple. In this study, we highlight the importance of acknowledging the interrelation between epistemology and ethics in the discourse on PECS. Finally, it is claimed that the focus on scientific facts in information on PECS risks making existential and ethical dilemmas and choices invisible.
孕前扩大携带者筛查(PECS)能让准父母了解生育患有遗传性疾病孩子的风险。对许多人来说,PECS也将成为一项重要的筛查测试,而网站可能在提供有关这种做法的信息方面发挥至关重要的作用。本文旨在研究荷兰网站上有关PECS信息中的合理性。所采用的方法是多模态批判性话语分析。这种方法能够审视描述中的规范和假设,以及话语中呈现的立场。数据包括荷兰两个遗传学部门网站上公开可用的材料。在结果部分,我们展示了所识别出的三种主要话语和主体立场:风险以及作为严重疾病可能调解者的夫妇;对科学事实和理性受孕者的关注;疾病的严重程度以及负责任的夫妇。在本研究中,我们强调了在PECS话语中承认认识论与伦理之间相互关系的重要性。最后,有人认为,PECS信息中对科学事实的关注可能会使生存和伦理困境及选择变得不可见。