title: Decision-making for non-invasive prenatal testing for Down syndrome: Hong Kong Chinese women's preferences for individual vs relational autonomy.
abstract: Individual autonomy in antenatal screening is internationally recognized and supported. Policy and practice guidelines in various countries place emphasis on the woman's right to make her own decision and are related to concepts such as self-determination, independence, and self-sufficiency. In contrast, the dominant perspective in Chinese medical ethics suggests that the family is pivotal in making medical decisions, hence providing support for relational autonomy. This study explored Hong Kong Chinese pregnant women's preferences for individual vs relational autonomy for non-invasive prenatal testing (NIPT) for Down syndrome. A qualitative study was carried out using semi-structured interviews with 36 women who had undertaken NIPT in Hong Kong. The findings show that most Hong Kong Chinese women valued aspects of both relational and individual autonomy in decision-making for NIPT. Women expected support from doctors as experts on the topic and wanted to involve their husband in decision-making while retaining control over the outcome. Somewhat surprisingly, the findings do not provide support for the involvement of family members in decision-making for NIPT. The adequacy of current interpretations of autonomy in prenatal testing policies as an individual approach needs discussion, where policy developers need to find a balance between individual and relational approaches.
authors: JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong SAR, China.
authors: J Y C
authors: JY
authors: Lau
authors: JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong SAR, China.|CUHK Centre for Bioethics, The Chinese University of Hong Kong, Hong Kong SAR, China.
authors: H
authors: H
authors: Yi
authors: Leeds Institute of Health Sciences, University of Leeds, Leeds, United Kingdom.
authors: S
authors: S
authors: Ahmed
mesh_terms: D000328:Adult; D044466:Asian People; D002755:Choice Behavior; D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis* / Q000208:ethnology / Q000235:genetics; D005260:Female; D005315:Fetal Diseases / Q000175:diagnosis* / Q000208:ethnology / Q000235:genetics; D006723:Hong Kong; D006801:Humans; D007182:Income / Q000706:statistics & numerical data; D007407:Interviews as Topic; D008875:Middle Aged; D026684:Personal Autonomy; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000941:ethics / Q000379:methods* / Q000523:psychology; D036301:Qualitative Research
keywords: Hong Kong; autonomy; decision-making; non-invasive prenatal testing (NIPT); qualitative study