Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study

Abstract

Background: Noninvasive prenatal testing is a recent technology that provides some genetic information about the fetus through the analysis of cell-free fetal DNA circulating in maternal blood. We aimed to identify the benefits, challenges and guiding ethical principles most relevant to the clinical integration of noninvasive prenatal testing in Canada, according to experts throughout the country. Methods: We conducted a 3-round Delphi study involving Canadian experts of contemporary discussions about the ethical and societal implications of prenatal testing and genomic technologies. In round 1, we asked participants to identify clinical benefits and challenges related to the implementation of noninvasive prenatal testing in Canada, and the ethical principles they think should guide it. In round 2, we asked participants to select the most important elements stated by their peers. In round 3, participants were informed of the aggregated results from round 2, and invited to revise or confirm their selection. Results: Round 1 had a participation rate of 20.2%, and involved 61 participants. Subsequent rounds 2 and 3 had retention rates of 95.1% (n = 58) and 84.5% (n = 49), respectively. Through these discussions, we identified 3 lists of benefits (n = 10), challenges (n = 27), and ethical principles (n = 16) prioritized by Canadian experts as being most relevant to the implementation of noninvasive prenatal testing in Canada. Interpretation: Although multiple and diverse potential issues were identified, Canadian experts agreed on 2 sets of requirements for the responsible implementation of noninvasive prenatal testing in Canada. Interdisciplinary appraisals may be instrumental to responsible policy-making related to the implementation of noninvasive prenatal testing in Canada.

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

“…The comparison of our findings in Lebanon and in Quebec points out the reasons underlying a similar concern raised by the routinization of NIPT: the potential increase in pregnancy terminations, which has been as well reported in other studies [36,37]. Since prenatal testing is inevitably linked to the abortion debate -as it may lead couples and pregnant women to consider whether to continue or terminate a pregnancy, abortion policy in place is of utmost relevance.…”

Discussing non‐invasive prenatal testing on Reddit: The benefits, the concerns, and the comradery

“…Confirming the findings from other studies with different methodologies, NIPT as discussed on Reddit is seen as providing valuable means of obtaining highly sought‐after information (including early detection of sex) in a manner that is better than other tests 42,43 . Redditors not only acknowledge the value of NIPT as providing “peace of mind,” but some state how NIPT helps support their mental and organizational preparation when making difficult pregnancy decisions, including for a range of birthing outcomes 7,44,45 …”

“…38 An initial drafting of the coding frame was drafted incorporating NIPT topics and issues raised by previous research. 1,[7][8][9][10][11][12][13] Then, a random sample analysis of 22 (23%) of the discussions was analyzed, whereby observations from the specific discourse in context were used to further shape the coding frame. The coding frame was split into four sections, designed to examine the question-and-answer, comment-and-reply nature of the discussions: (1) NIPT-related questions, (2) NIPT-related concerns, (3) NIPT-related benefits, and (4) additional aspects evident in the discourse, designed to capture complex elements in the discussions not necessarily evident in the other categories.…”

“…2,3 Research shows that NIPT could increasingly be implemented as a first-tier screen for all pregnant women and many countries including Canada (http://pegasus-pegase.ca/), are exploring this option 1,[4][5][6] Barriers to increased implementation of NIPT center on costs (for individuals or healthcare systems), patient and practitioner education, as well as various social and ethical implications. 1,7,8 NIPT is seen as beneficial, as it enhances reproductive autonomy but also problematic, as it can, for example, have negative impact on disability rights. 9,10 Research generally finds public support for access to NIPT for all pregnant women, 7,[11][12][13] but issues persist around how NIPT information is provided.…”

“…1,7,8 NIPT is seen as beneficial, as it enhances reproductive autonomy but also problematic, as it can, for example, have negative impact on disability rights. 9,10 Research generally finds public support for access to NIPT for all pregnant women, 7,[11][12][13] but issues persist around how NIPT information is provided. 9,12 Because information gaps are evident, and because women are not always satisfied with the manner in which information is provided by health care providers, 4 it is common for the public to seek information from numerous sources, including online social media.…”