Noninvasive Prenatal Testing: Views of Canadian Pregnant Women and Their Partners Regarding Pressure and Societal Concerns

Abstract

Background

Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT.

Methods

A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces.

Results

882 pregnant women and 395 partners completed the survey. 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome.

Conclusions

Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation.

Keywords:

• Eugenics
• NIPT
• prenatal screening
• pressure to test
• routinization
• social impact

Acknowledgements

The authors would like to thank members of the NIPT research team: Stephanie Cloutier, Hortense Gallois, Cynthia Henriksen, Chris Kaposy, Tierry Morel-Laforce, and Marie-Christine Roy, as well as France Légaré, William Ehman, François Rousseau, Brenda Wilson, Marsha Michie, Talya Miron-Shatz, and Lyn Chitty.

Author contributions

The study was conceived by VR and AML, designed by VR, AML, JLB, HH. Data acquisition was overseen by SB and AA. Data was interpreted by SB, VR, AML, MEL, and CD. VR wrote the first draft in close collaboration with AML, with extensive support from SB. All authors revised the paper critically with important intellectual contributions, and approved the final version for publication. VR and AML are equal contributors.

Disclosure statement

The authors have no conflicts of interest to declare.

Ethical approval

This study was approved by the institutional review board(s) at the CHU Sainte-Justine associated with the University of Montreal as well as, locally, from the CRCHU de Québec, the Ottawa Hospital Research Institute, BC Children’s Hospital, and the University of Calgary.

Notes

1 These questions were asked before the respondents were referred to the information sheet.

2 This aligns with a current study showing that termination rates following screening for DS by NIPT did not change (Hill et al. 2017).

Additional information

Funding

VR and AML are investigators in the PEGASUS Research Project (PErsonalized Genomics for prenatal Aneuploidy Screening USing maternal blood) that was funded by Genome Canada, Genome Quebec and the Canadian Institutes for Health Research. PEGASUS received co-funding or in-kind funding from private corporations which either offered commercial NIPT tests (Ariosa Diagnostics Inc, San Jose, CA) or reagents and/or equipment that can be used to perform NIPT assays (Life Technologies Inc, NY, USA; Illumina, San Diego, CA, USA; QIAGEN, Hilden, GER; Perkin Elmer, Waltham, MASS, USA). This funding was at arm’s length from the scientific component of the project. The Réseau de Médecine Génétique Appliquée (RMGA), a research network funded by the Fonds de Recherche du Québec – Santé (FRQS) has also provided co-funding. AML also has a Canadian Institutes of Health Research (CIHR) New Investigator Salary Support Grant, and received a FRQS Starting Grant for New Investigators – Junior 1.