title: Motivations for undertaking DNA sequencing-based non-invasive prenatal testing for fetal aneuploidy: a qualitative study with early adopter patients in Hong Kong.
abstract: BACKGROUND
  A newly introduced cell-free fetal DNA sequencing based non-invasive prenatal testing (DNA-NIPT) detects Down syndrome with sensitivity of 99% at early gestational stage without risk of miscarriage. Attention has been given to its public health implications; little is known from consumer perspectives. This qualitative study aimed to explore women's motivations for using, and perceptions of, DNA-NIPT in Hong Kong.
  
  
  RESULTS
  In-depth interviews were conducted with 45 women who had undertaken DNA-NIPT recruited by purposive sampling based on socio-demographic and clinical characteristics. The sample included 31 women identified as high-risk from serum and ultrasound based Down syndrome screening (SU-DSS). Thematic narrative analysis examined informed-decision making of the test and identified the benefits and needs. Women outlined a number of reasons for accessing DNA-NIPT: reducing the uncertainty associated with risk probability-based results from SU-DSS, undertaking DNA-NIPT as a comprehensive measure to counteract risk from childbearing especially at advanced age, perceived predictive accuracy and absence of risk of harm to fetus. Accounts of women deemed high-risk or not high-risk are distinctive in a number of respects. High-risk women accessed DNA-NIPT to get a clearer idea of their risk. This group perceived SU-DSS as an unnecessary and confusing procedure because of its varying, protocol-dependent detection rates. Those women not deemed high-risk, in contrast, undertook DNA-NIPT for psychological assurance and to reduce anxiety even after receiving the negative result from SU-DSS.
  
  
  CONCLUSIONS
  DNA-NIPT was regarded positively by women who chose this method of screening over the routine, less expensive testing options. Given its perceived utility, health providers need to consider whether DNA-NIPT should be offered as part of universal routine care to women at high-risk for fetal aneuploidy. If this is the case, then further development of guidelines and quality assurance will be needed to provide a service suited to patients' needs.
authors: Health Ethics and Medical Humanities Unit, Centre for Global Health, JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Shatin, New Territories, Hong Kong SAR, China.
authors: Huso
authors: H
authors: Yi
authors: Nina
authors: N
authors: Hallowell
authors: Sian
authors: S
authors: Griffiths
authors: Tak
authors: T
authors: Yeung Leung
mesh_terms: D000328:Adult; D000782:Aneuploidy; D003362:Cost-Benefit Analysis; D004314:Down Syndrome / Q000175:diagnosis* / Q000235:genetics; D005260:Female; D005333:Fetus; D007722:Health Knowledge, Attitudes, Practice; D006723:Hong Kong; D006801:Humans; D009042:Motivation; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000191:economics / Q000523:psychology*; D017422:Sequence Analysis, DNA