Laberge Anne-Marie, Birko Stanislav, Lemoine Marie-Ève, Le Clerc-Blain Jessica, Haidar Hazar, Affdal Aliya O, Dupras Charles, Ravitsky Vardit
Department of Pediatrics, Université de Montréal, Montréal, QC; Service de génétique médicale, Centre hospitalier universitaire Sainte-Justine, Montréal, QC; Centre de recherche du Centre hospitalier universitaire Sainte-Justine, Montréal, QC.
Bioethics Program, Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montréal, QC.
J Obstet Gynaecol Can. 2019 Jun;41(6):782-791. doi: 10.1016/j.jogc.2018.11.003. Epub 2019 Feb 7.
This study sought to assess Canadian pregnant women's and their partners' preferences for information about non-invasive prenatal testing (NIPT).
Pregnant women and their partners across Canada were surveyed as part of the Personalized Genomics for prenatal Aneuploidy Screening Using maternal blood (PEGASUS) study.
A total of 882 pregnant women and 395 partners participated. Women preferred being informed by a physician (77.2%). They preferred getting information ahead of time, except for information about resources for families with Down syndrome, which they preferred getting with test results. More than half thought that written consent is important (63.7%) and could decide whether to do NIPT on the day they received the information (54.9%). Women preferred to be informed of results by telephone (43.7%) or in person (28%), but they preferred in person if they were considered at high risk for Down syndrome on the basis of the results (76%). The partner was the person whose input was considered most important (62.6%). Partners' preferences were similar, except that partners tended to want information later (at the time of the test or with the results) and felt that their opinion was not considered as highly by health professionals.
Canadian women want information about NIPT early, in person, by a knowledgeable physician. Partners also want to be informed and involved in the decision-making process.
本研究旨在评估加拿大孕妇及其伴侣对非侵入性产前检测（NIPT）相关信息的偏好。
作为“利用母血进行产前非整倍体筛查的个性化基因组学”（PEGASUS）研究的一部分，对加拿大各地的孕妇及其伴侣进行了调查。
共有882名孕妇和395名伴侣参与。女性更倾向于由医生告知相关信息（77.2%）。她们倾向于提前获取信息，但关于唐氏综合征家庭资源的信息除外，她们更倾向于与检测结果一起获取该信息。超过一半的人认为书面同意很重要（63.7%），并且能够在收到信息当天决定是否进行NIPT（54.9%）。女性更倾向于通过电话（43.7%）或亲自（28%）得知检测结果，但如果根据检测结果被认为唐氏综合征风险较高，她们更倾向于亲自得知结果（76%）。伴侣是被认为意见最为重要的人（62.6%）。伴侣的偏好与之相似，只是伴侣倾向于在更晚的时候（检测时或与结果一起）获取信息，并且觉得健康专业人员对他们意见的重视程度没有那么高。
加拿大女性希望由知识渊博的医生尽早亲自告知她们有关NIPT的信息。伴侣也希望得到告知并参与决策过程。
