Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec

ABSTRACT

Noninvasive prenatal testing (NIPT), based on the detection of cell-free fetal DNA in maternal blood, has transformed the landscape of prenatal care by offering clinical benefits (noninvasive, high specificity and sensitivity, early detection of abnormalities) compared to existing prenatal screening tests. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the social and cultural context of prenatal testing decisions. In a Western context, the main ethical argument for providing access and public funding of prenatal tests is the promotion of reproductive autonomy (also referred to as “procreative liberty” and “reproductive freedom”), by enabling pregnant women and couples to access information about the fetus in order to choose a certain course of action for pregnancy management (continuation of pregnancy and preparation for birth or termination). So how is the framework of reproductive autonomy operationalized in non-Western cultural contexts? We used Quebec, Canada, and Beirut, Lebanon, for case studies to explore what ethical considerations related to reproductive autonomy should guide the implementation of the test in various cultural contexts. To answer this question, we conducted a qualitative study to (1) explore the perceptions, values, and preferences of pregnant women and their partners about NIPT and (2) examine how these values and perceptions influence reproductive autonomy and decision making in relation to NIPT in these two different cultural settings, Lebanon and Quebec. Our findings may guide health care professionals in providing counseling and in helping women and their partners make better informed prenatal testing decisions. Further, at a policy level, such understanding might inform the development of local guidelines and policies that are appropriate to each context.

KEYWORDS:

• noninvasive prenatal testing
• reproductive autonomy
• decision making
• Lebanon
• Quebec

Ethical approval

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Conflicts of interest

The authors declare no conflict of interest.

Acknowledgements

The authors thank C.H. for her assistance in translation and Sonya Mladenova for her insightful comments. We are grateful to all the participants in this study and to those who helped in recruiting them. The authors also thank the American University of Beirut Medical Center and the Centre hospitalier universitaire Sainte-Justine.

Author contributions

HH and VR designed the study. HH collected the data. HH and GB analyzed the data, with input from MV, VR, AML, and LG. HH drafted the article with input from MV and VR. All authors critically reviewed the article and approved the final version for publication.

Notes

¹ In this article, we use the term NIPT (noninvasive prenatal testing) rather than NIPS (noninvasive prenatal screening) to refer to cell-free DNA (cfDNA) since it is an established term in the literature. We clarify that it is currently used as a screening test.

² To avoid repetition, in this article “reproductive autonomy” refers to the context of prenatal testing.

³ We thank the reviewer for this suggestion.

⁴ In order to anonymize our data we use symbols to indicate the following: Lb: Lebanese, Qc: Quebecois, Cp: couple, M: male; and F: female.

⁵ Verifi is a brand name given to NIPT, marketed through a company called Verinata (other brand names, given by other companies, include MaterniT21, Harmony, and Panorama).

⁶ At the time of data collection, the cost of NIPT was around CAD800 in Montreal and USD800 in Lebanon.

⁷ Anecdotal evidence supports this claim as well. Following the recorded interviews, the lead author had the opportunity to have some informal discussions with a few couples and pregnant women who told her about the good, long relationships they have with their physician “friends.” Further, a couple told her that their “well-known physician” was recommended by one of their family members and a woman told the author that she trusts her physician since he is her mother's cousin.

Additional information

Funding

This study was completed under the PEGASUS (PErsonalized Genomics for prenatal Aneuploidy Screening USing maternal blood) grant, funded by Genome Canada, Genome Quebec, and the Canadian Institutes for Health Research (CIHR).