BackgroundCanadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does.MethodsIn this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated.ResultsThe paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents’ levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results.ConclusionSalient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2153-y) contains supplementary material, which is available to authorized users.
Objective: This study sought to assess Canadian pregnant women's and their partners' preferences for information about non-invasive prenatal testing (NIPT). Methods: Pregnant women and their partners across Canada were surveyed as part of the Personalized Genomics for prenatal Aneuploidy Screening Using maternal blood (PEGASUS) study. Results: A total of 882 pregnant women and 395 partners participated. Women preferred being informed by a physician (77.2%). They preferred getting information ahead of time, except for information about resources for families with Down syndrome, which they preferred getting with test results. More than half thought that written consent is important (63.7%) and could decide whether to do NIPT on the day they received the information (54.9%). Women preferred to be informed of results by telephone (43.7%) or in person (28%), but they preferred in person if they were considered at high risk for Down syndrome on the basis of the results (76%). The partner was the person whose input was considered most important (62.6%). Partners' preferences were similar, except that partners tended to want information later (at the time of the test or with the results) and felt that their opinion was not considered as highly by health professionals. Conclusion: Canadian women want information about NIPT early, in person, by a knowledgeable physician. Partners also want to be informed and involved in the decision-making process. Résumé Objectif : Cette étude visait à déterminer les préférences des femmes enceintes et de leur partenaire quant à la communication de renseignements relatifs au test prénatal non effractif (TPNE). Méthodologie : Des femmes enceintes et leurs partenaires canadiens ont été sondés dans le cadre de l'étude PEGASUS (Génomique personnalisée pour le dépistage prénatal de l'aneuploïdie à l'aide du sang maternel). Résultats : Au total, 882 femmes enceintes et 395 partenaires ont répondu au sondage. Selon ce dernier, les femmes préfèrent que les renseignements viennent d'un médecin (77,2 %), et préfèrent les recevoir à l'avance, sauf ceux sur les ressources destinées aux familles touchées par le syndrome de Down, qu'elles aiment mieux obtenir avec les résultats du test. Plus de la moitié des répondantes estiment que l'obtention d'un consentement écrit est importante (63,7 %) ou être en mesure de prendre une décision relative au TPNE le jour même où elles reçoivent les renseignements (54,9 %). Les femmes aiment également mieux recevoir les résultats du test par téléphone (43,7 %) ou en personne (28 %), mais préfèrent les recevoir en personne s'ils font état d'un risque élevé de syndrome
Background
In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. non-medical information) that couples might be exposed to and how this might complicate their informed decision-making. Currently, only limited research, mainly carried out in western countries, was conducted on women’s and partners’ views regarding the potential expansion of NIPT.
Methods
This study used semi-structured interviews with pregnant women and their partners to explore their views on future potential NIPT applications such as non-medical sex selection and non-medical traits, paternity testing, and NIPT use for fetal whole genome sequencing (FWGS). It was conducted in Lebanon and Quebec, as case studies to explore the impact of cultural differences on these views.
Results
We found no differences and many similarities when comparing the perceptions of participants in both contexts. While couples in both settings disapproved of the use of NIPT for non-medical sex selection and non-medical traits such as physical characteristics, they were near-unanimous about their support for its use for paternity testing in specific cases, such as legal doubts or conflicts related to the identity of the father. Participants were more ambivalent about NIPT for Fetal Whole Genome Sequencing. They supported this use to detect conditions that would express at birth or early childhood, while objecting to testing for adult-onset conditions.
Conclusions
These results can further inform the debate on the future uses of NIPT and future policy related its implementation.
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