Li Grace, Chandrasekharan Subhashini, Allyse Megan
Duke University, Durham, NC, USA.
Center for Global Health, Duke University, Durham, NC, USA.
J Genet Couns. 2017 Feb;26(1):32-39. doi: 10.1007/s10897-016-9976-3. Epub 2016 Jun 9.
The introduction of cell-free DNA prenatal genetic screening has rekindled discussion of ethical and social questions surrounding prenatal testing, perceptions of disability, and abortion. The growing use of prenatal genetic screening presents a unique opportunity to assess decision-making around new methods of prenatal testing; especially as there is little available research comparing individual and cultural differences that affect a pregnant woman's decision-making on prenatal testing. We performed a content analysis of online pregnancy forums in the United States and Mainland China. Content from January 2012 to December 2013 was identified through search methodologies and refined to remove duplication. China-based content was translated by a native Mandarin speaker. We used qualitative analysis methods to identify common themes in the dataset. There were 333 English responses and 519 Mandarin responses. Three main themese were identified in the data: decision making factors, attitude towards the pregnancy, and attitudes towards abortion. Women's narratives reflected how broader social forces can have an impact on intimate personal decision-making. Women in the Mandarin dataset evoked stronger narratives of community and/or family decision-making in pregnancy and were more accepting of the possibility of abortion in the event of a finding of fetal abnormality. Narrative in the English dataset more frequently evoked ideas of unconditional love, regardless of fetal diagnosis, but also acknowledged much stronger support services for individuals with disability and less awareness of stigma. These results highlight the necessity of awareness around how broader cultural and social factors can consciously or unconsciously impact women's decisions and highlight potential focus areas for future counseling efforts.
游离DNA产前基因筛查的引入,再次引发了围绕产前检测、对残疾的认知以及堕胎等伦理和社会问题的讨论。产前基因筛查的日益广泛应用,为评估围绕新型产前检测方法的决策过程提供了一个独特的契机;尤其是鉴于目前几乎没有研究比较影响孕妇产前检测决策的个体差异和文化差异。我们对美国和中国大陆的在线怀孕论坛进行了内容分析。通过搜索方法确定了2012年1月至2013年12月的内容,并进行了筛选以去除重复内容。基于中国的内容由一位普通话母语者进行翻译。我们使用定性分析方法来确定数据集中的共同主题。共有333条英文回复和519条中文回复。数据中确定了三个主要主题:决策因素、对怀孕的态度以及对堕胎的态度。女性的叙述反映了更广泛的社会力量如何能够对亲密的个人决策产生影响。中文数据集中的女性在怀孕决策中更多地提及社区和/或家庭决策的叙述,并且在发现胎儿异常的情况下对堕胎可能性的接受度更高。英文数据集中的叙述更频繁地唤起了无条件爱的观念,无论胎儿诊断结果如何,但也承认对残疾人士有更强大的支持服务,且对耻辱感的认知较少。这些结果凸显了认识更广泛的文化和社会因素如何有意识或无意识地影响女性决策的必要性,并突出了未来咨询工作可能关注的重点领域。