Governing the futures of non-invasive prenatal testing: An exploration of social acceptability using the Delphi method

摘要: Abstract Non-invasive prenatal testing (NIPT) using cell-free DNA (cfDNA) offers numerous benefits to pregnant women and their families. It also raises ethical, legal social concerns regarding, for instance, the possible effects of a routinization genetic on free informed decision-making by prospective parents, role state in governing its use. Technological advances are allowing cfDNA analyses detect an increasing number risks conditions fetus, potentially further exacerbating such concerns. From May 2015 December 2016, we conducted three-round Policy Delphi study (NR1 = 61, NR2 = 58, NR3 = 47; overall retention rate = 77.0%) explore acceptability (SA) current potential future uses NIPT Canada according participants with relevant professional, research or advocacy expertise. Participants came from four groups: healthcare professionals (NR3 = 14), sciences humanities researchers (NR3 = 13), patients/disability rights advocates cultural/religious communities (NR3 = 6). This paper presents SA criteria contextual contingencies assessment NIPT's group. reports what (conditions motives) thought should be banned, permitted, publicly funded, promoted as public health strategy. According them, resulting severe pain early death, well trisomies (13, 18, 21) sex chromosome abnormalities, covered Canadian insurance. However, there was wide agreement that direct-to-consumer legally fetal non-medical reasons either proscribed discouraged. In addition identifying areas consensus, our results point disagreement required level governance whole-genome sequencing late onset low penetrance. provides model exploring emerging technologies method.