"The Top Priority Is a Healthy Baby": Narratives of Health, Disability, and Abortion in Online Pregnancy Forum Discussions in the US and China.
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.
Duke University, Durham, NC, USA.
Grace
G
Li
Center for Global Health, Duke University, Durham, NC, USA.
Subhashini
S
Chandrasekharan
Biomedical Ethics Program, Mayo Clinic, 200 First St SW, Rochester, MN, 55905, USA. allyse.megan@mayo.edu.
Megan
M
Allyse
D000028:Abortion, Induced; D000328:Adult; D002681:China; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D008297:Male; D033262:Narration; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000941:ethics / Q000523:psychology*; D014481:United States; D055815:Young Adult
Abortion; Decision-making; Disability; Down syndrome; Prenatal testing