This study provides an insight into the opinions and views of participants regarding potential future uses of NIPT from two different cultural contexts: Quebec and Lebanon. The most interesting finding is the striking similarities between the views of participants from both settings. We expected to find differences because of the specific cultural and social backgrounds characterizing each context. We also expected differences due to findings we published previously, based on our analysis of different themes, showing how these backgrounds shape and influence pregnant women and couples’ decision-making surrounding NIPT [23].
Most participants from both settings were enthusiastic about knowing the sex of the fetus through NIPT. However, they were unanimously against considering it for non-medical sex selection. Objections to the use of NIPT for sex selection were also reported by other studies, where diverse stakeholders including the public [27], pregnant women and women [18, 19, 21], and their partners [21] disapproved of NIPT for sex selection. Interestingly, only Quebecois participant feared that some individuals would terminate a pregnancy based on the sex of the fetus. This concern might be tied to the debate surrounding termination of pregnancy, which might in turn be considered within local cultural contexts and policies that shape reproductive decision making.
NIPT may facilitate couples and pregnant women’s choice by offering them information regarding the fetus’s health and hence, allowing them either to prepare for the birth of a child with a certain genetic condition or to consider the option of pregnancy termination.
It is worthy to note that our study considers future uses of NIPT that may be medical or not (such as non-medical sex selection). The concerns expressed by Canadian participants regarding non-medical sex selection through selective termination, need to be understood on the backdrop of the decriminalisation of abortion in Canada and its availability, in principle, throughout the pregnancy [28]. In Canada, women can theoretically (notwithstanding local logistical barriers) access abortion for any reason and their reproductive rights are protected.
This is clearly not the case in Lebanon, where reproductive rights are more restrained by law, since termination of pregnancy is illegal, except to save the mother’s life [23, 29]. On a clinical level, abortion is performed in a clandestine manner and might be accessible for a certain group of women who are able to afford paying for it [29]. Expanding the use of NIPT will therefore have much less influence on Lebanese women’s and couples’ choices surrounding pregnancy management.
Expanding the use of NIPT use for non-medical traits, such as eye colour, was rejected by the vast majority of participants from both contexts. Rationales put forward by participants were that doing so was against God’s will and/or against nature’s course. These justifications have been raised and explored in other studies. For instance, religion and accepting what God gives you was a pronounced theme in a study that surveyed and interviewed Latina women deciding whether to accept or reject NIPT [30]. In another study, performed by van Schendel et al., participants stated that “you should let nature run its course” when they were interviewed about widening the scope of NIPT to include an extended range of genetic disorders, as well as its use for non-medical reasons [21].
Invoking God and God’s will to discuss NIPT use for non-medical reasons by Lebanese participants reflects the social and cultural nature of the Lebanese context. In Lebanon, religion is integrated in state affairs – “personal matters including inheritance, marriage, divorce, custody, and support are dealt with in religious courts” [31] (p.2), and religious leaders are consulted “whenever a new law is to be proposed” [31], especially when it touches areas such as end-of-life and abortion. Hence, religion plays an important role, especially when it comes to decisions related to procreation and family. For instance, in our previous paper, religion was shown to be one of the main factors in Lebanese women’s and partners’ decision-making on whether or not to accept NIPT [23].
However, it was a surprising finding that religious reasons were brought forward by Quebecois participants given that religion is not embedded in everyday or political life especially when compared to Lebanon. In Quebec, since 1960, the State and the Church have been separated, with no involvement of the Catholic church in state affairs [32]. One possible explanation of Quebecois participants invoking God could be that 17/22 (77.2%) of our study participants considered themselves as religious, more specifically Christian. This is a similar proportion to the general Quebec population who identify as Christian (82.2%) [33]. Our findings show that in the context of decisions related to pregnancy, participants were influenced by their religious values and inspired by them to justify their objection to the use of NIPT for non-medical reasons. It is difficult to ascertain whether there was a self-selection bias in our study, i.e. whether Quebecois participants who have more religious backgrounds were more interested in participating in our study.
The majority of participants from Lebanon and Quebec were favourable towards the use of NIPT for paternity testing in specific cases, such as the existence of doubts or conflicts with regards to the identity of the father. This finding does not align with the one in Farrimond & Kelly’s study, where participants mostly did not support paternity testing through NIPT [27] out of fear of potentially increasing terminations for non-medical reasons.
Participants from both countries also shared similar views concerning the use of NIPT for FWGS. Contrary to the other uses explored, participants were more ambivalent when it came to this use. They were interested in FWGS for diseases that develop shortly after birth or during childhood and that are preventable or treatable. Our findings resonate with those from other studies showing that participants were favorable towards testing for childhood-onset conditions, whether or not performed through FWGS [21, 34,35,36].
However, our participants disapproved of receiving information about adult-onset conditions. Attitudes towards testing adult-onset conditions in the literature are more varied compared to childhood-onset conditions. In the Kalynchuck et al. study (2015), although the acceptability of testing for adult-onset conditions was not as strong as for childhood-onset conditions, 76% of pregnant women and their partners going through first-trimester screening sated they would want to receive fetal whole-exome sequencing (FWES) results for treatable adult-onset conditions, and 74.3% for untreatable adult-onset conditions. Similar results were reported in Sullivan et al.’s study (2019), where 81.2% of pregnant women (≥ 8 weeks) receiving prenatal care stated they would want to receive, following FWGS through NIPT, information about common treatable conditions, 76.3% for serious treatable adult-conditions, 68.9% for fatal non-treatable adult-onset conditions, and 65.5% for common untreatable conditions.
Conversely, participants from other studies were not as interested in testing for adult-onset conditions. In Bowman-Smart et al. (2019), 37.6% of pregnant women who had already undergone NIPT in the past supported the availability of NIPT for non-preventable adult-onset conditions, and 45.0% for preventable adult-onset conditions [18]. Moreover, van Schendel et al. (2014) report that 29% of pregnant women recruited through a Dutch pregnancy website believed that NIPT testing for severe late-onset conditions should be accessible [21]. Our participants considered the severity of the condition (severe and life-threatening diseases), its timing (neonatal, childhood and adulthood), and the quality of life of the future child, as important factors for the acceptability of testing with FWGS, similarly to what has been reported by participants in the study by van Schendel et al. (2014). Further, noteworthy that a study performed by Poulton et al. showed that testing for adult-onset conditions seems to be more acceptable when it is performed through preimplantation genetic diagnosis than through prenatal testing [37]. This can be explained by preimplantation diagnosis avoiding the thorny ethical issues associated with prenatal testing, such as the possible decision to terminate an affected pregnancy.
In sum, our participants seemed to accept NIPT uses for detecting diseases in order to treat or prevent them if possible. However, whenever the discussion stepped into the domain of non-medical uses, they referred to God, religion and nature as justifications for their objections. One possible explanation of this finding could be that referring to God and nature reflects participants’ fear of over control and treating children like products.
Some Quebecois participants spontaneously mentioned that it was the child’s right not to know about adult-onset conditions. This is in line with the Canadian Paediatric Society’s position statement on testing of minors, which states that “for genetic conditions that will not present until adulthood (susceptibility or predictive testing), testing should be deferred until the child is competent to decide whether they want the information” [38] (p.45), as well as recommendations of other professional societies worldwide [39]. This is based on the premise that testing minors for adult-onset conditions hinders their right to an open future, a right based on the respect of the child’s autonomy and privacy. Making decisions for the child when there are no immediate concerns narrows the child’s future options, and hinders his/her right not to know [40] p.23 [40, 41] (Borry et al., 2014, p.20).
However, the child’s right not to know was not addressed by Lebanese participants. This might be explained by the social and cultural contexts in place, where children have little to no autonomy over their decisions, including medical decisions [42], and parents are considered to be the principal decision-makers for the child.
Strengths and limitations
The comparative nature of our study provides insight into non-Western views, perspectives, and attitudes towards future uses of NIPT, which, to our knowledge, is not yet explored in the literature. In addition, comparative studies allow to shed light on differences, but also similarities between populations. While cross-cultural differences had important implications for NIPT decision-making [23], in this case of expanded use of NIPT, participants shared similar views, irrespective of these cultural differences. This is an unexpected and illuminating finding. Our findings highlight the opportunity for further research to examine a wider range of potential future applications of NIPT in additional populations such as people with disabilities, healthcare professionals, and policy makers.
The description of FWGS provided to participants had been simplified to make it easier to understand. We did not offer a detailed description of conditions that might be detected. For instance, we did not differentiate between preventable and non-preventable adult-onset conditions, which might have affected participants’ responses. Considering that some of the future uses explored in our study were not feasible or not offered at the time the interviews were conducted, participants had to reflect on hypothetical scenarios. It is possible that their reasoning would have been different if they had to make actual decisions.
Further, we noted that in our study, one Lebanese and two Quebecoise women chose NIPT testing. This might be explained by the fact that at the time of the interviews, the cost of NIPT was a barrier to access [23]. Notwithstanding, the low number of adopters of NIPT might have influenced participants’ attitudes towards the potential future uses of NIPT, including FWGS, paternity testing, and physical traits.
In addition, our study participants did not include women with a confirmed diagnosis of aneuploidy. The views of women post-diagnosis may be different, as the diagnosis of their fetus may influence their perceptions regarding the potential future uses of NIPT.
