“The Top Priority Is a Healthy Baby”: Narratives of Health, Disability, and Abortion in Online Pregnancy Forum Discussions in the US and China

Abstract

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.

What are women saying about noninvasive prenatal testing? An analysis of online pregnancy discussion forums

“…As we were only searching open‐access forums in the English language, our study is likely to be an underrepresentation of the number of discussion forums regarding NIPT. Furthermore, if we had included specific NIPT brands in our search terms the number of discussion forums may have been higher (cf search by Li et al).…”

“…Shopping terminologies were evident in the acquisition of NIPT and our findings similar to those found by Li et al and Bowman-Smart et al who reported women discussing "spending money to buy peace of mind". 11,23 On their website, Harmony describe how NIPT can be used "For your baby's health and your peace of mind," and BGI's brands Nifty as "Prenatal peace." It is therefore not surprising to see women echoing this same language.…”

“…Furthermore, if we had included specific NIPT brands in our search terms the number of discussion forums may have been higher (cf search by Li et al 23 ).…”

The Influence of Experiential Knowledge and Societal Perceptions on Decision-Making Regarding Non-Invasive Prenatal Testing (NIPT)

“…The sample in this study is largely composed of white, married women with high socioeconomic status and educational attainment, and therefore does not account for how variations in race, socioeconomic status, and education may shape experiential knowledge and factor into NIPT use decision-making. Future studies should aim to evaluate this framework of decision-making in more diverse samples [37,38,9].…”

Precision assessment of public attitudes toward genetic testing

“…The main reason for the predominantly hearing Chinese population to seek prenatal testing is to have a hearing baby. This is assumed, because a respondent was only asked to explain if not interested [Fu et al, ], but it has been shown that the top priority is a healthy baby for Chinese couples [Li et al, ]. In contrast, being able to prepare for having a deaf child was the primary reason for testing given by most parents of deaf children in the United States [Brunger et al, ].…”