Rationale 1: charging women to prevent increased uptake of screening

One reason for charging pregnant women for NIPT is to prevent an increase in uptake of prenatal screening, and thus to prevent an increase in the number of abortions. Although commentators do not usually explicitly mention this rationale, it follows from the reverse concern that public funding of NIPT may encourage women to take part in prenatal screening. If the state offers prenatal screening free of charge, it gives the impression that it condones screening as a form of routine care among other antenatal care services. An offer of NIPT would lead to a higher uptake of screening and—following this rationale—a higher uptake is perceived to be problematic.

With the start of the Dutch NIPT implementation study in April 2017, for instance, it was feared that pregnant women would ‘rush’ to academic medical centres to obtain NIPT.18 The notion that all Dutch women would engage in screening was seen as intrinsically undesirable. Pregnant women and mothers of children with Down syndrome were concerned that abortion rates would rise, and that Down syndrome might disappear from society.19–21

This is not likely. In the Netherlands, the majority of women decline first-trimester screening altogether, even today, now NIPT is widely available. Moreover, not all prenatal screening results in abortion. In the period 2000–2013, around 85% of pregnancies with a confirmed diagnosis of Down syndrome resulted in termination,22 which means that a substantial minority chose to continue the pregnancy. Certain groups in Dutch society hold a relatively high acceptance and positive image of Down syndrome; some Dutch women do not consider Down syndrome ‘severe enough to justify termination of pregnancy’.23 The number is consistent with termination rates found in other countries, such as the USA,24 the UK25 and other European countries,26 but lower than the rates reported elsewhere, such as 93% in Australia27 and 98% in Denmark.28 Overall, the prevalence of Down syndrome has been relatively stable around the world since the early 1990s.29 This is not likely to change with the introduction of NIPT, as in countries like the UK and the Netherlands some women continue to opt for first-trimester prenatal screening ‘for information only’1 and refrain from abortion. A recent review of studies from the USA, Asia and Europe suggested that termination rates following the introduction of NIPT were unchanged or even decreased.30

Even if Down syndrome would disappear from society, this may be considered a loss in terms of social diversity, but it may not be a soluble problem or a moral wrong as long as terminations resulted from pregnant women’s autonomous decisions. A related—and possibly valid—concern is that if fewer children are born with Down syndrome, the acceptation of persons with Down syndrome and the quality of their medical care and support might decrease,20 21 and discrimination and stigmatisation of affected persons and families might increase. Pregnant women and their partners may indeed feel less free to carry an affected pregnancy to term if good-quality medical care and support were not available for disabled children. Reproductive autonomy, the stated aim of first-trimester prenatal screening,12 presupposes that disabled children receive the support they need. Therefore, the existence of ‘decent, fair, inclusive and supportive policies with regard to the abilities and conditions of all people’15 is a precondition for a responsible prenatal screening programme.

Charging money can be thought of as a political compromise to those who oppose widespread use of prenatal screening and/or abortion and believe that first-trimester screening may (need to) be available to women who actively and purposively request it, but should not be too readily available. (Co)payment thus serves as a barrier to access, aimed at discouraging women from taking part. However, this is not consistent with the aim of prenatal screening. Women should not be withheld from screening, just as those who oppose screening should not be put under pressure to take part. In Dutch counselling practices, women are presented with an ‘information offer’ about screening first, which they are free to refuse, to safeguard their ‘right not to know’. Also, the ethical requirement of non-directiveness in counselling is meant to safeguard the voluntariness of participation. Such measures should be in place in screening programmes around the world to avoid any pressure on women to participate in screening just because it is ‘the norm’.31

In countries where screening and/or abortion are morally controversial, so it is argued, it is not obvious that society should bear the costs of prenatal screening.32 Other healthcare priorities may be more important than sustaining screening programmes aimed at promoting reproductive ‘liberty and autonomy’.15 In response, we would like to stress that prenatal screening does not aim at promoting unrestricted reproductive liberty and autonomy, but at offering information about severe health conditions in the fetus that could be a reason for pregnant women to consider terminating the pregnancy, so as to prevent the birth of an affected child. Children born with trisomy 13 or 18 are severely ill, and most children die before birth or within days, weeks or months after birth. There is less consensus on Down syndrome as a justified reason to terminate an affected pregnancy; some children born with trisomy 21 may lead relatively contented lives, while others develop severe cognitive delays and somatic conditions. A life with Down syndrome, ‘even if it does not involve major medical problems, is fraught with intellectual disabilities and […] it is, in most cases, a life that is shorter than other human lives’.33 Some prospective parents may wish to prevent this in their families. Empirically, there is broad societal support for public funding of NIPT for trisomies. A Canadian study found that the majority of women (66.9%) thought that all pregnant women should have access to NIPT free of charge.11 Also women in Australia (93% of respondents) have been found to support public funding of NIPT.34

Finally, by putting up a barrier that is higher for less affluent women than for more affluent women, the (co)payment requirement raises intractable justice concerns and hinders equity of access to first-trimester prenatal screening. Charging for NIPT affects disproportionally those who are least well off financially, which challenges the principle of equal access to first-trimester prenatal screening. The (co)payment requirement may in part explain the especially low uptake among groups of lower socioeconomic status and minority ethnic groups vis-à-vis groups of higher socioeconomic status, which has been found to be unrelated to attitudes towards screening.35 Rather, socioeconomically disadvantaged women are less likely to act on their (positive) attitudes towards screening than socioeconomically advantaged women when confronted with financial and physical barriers, such as requiring extra visits to the midwifery clinic. Women from minority ethnic groups may also be less knowledgeable about Down syndrome36 and other chromosomal abnormalities. Putting up a financial barrier may exacerbate these differences in uptake,37 and therewith it may exacerbate choice disparities among groups of higher and lower socioeconomic status. Offering NIPT free of charge is likely to reduce these disparities.

Alternatively, differentiated funding policies could be considered, in which women who can afford (co)paying for NIPT would be asked to do so, while those who cannot would be offered NIPT free of charge, or would be partly reimbursed afterwards. Although other ways to promote equal access to prenatal screening can thus be imagined, practical and logistical issues are likely to limit the feasibility of, for instance, differentiated pricing schemes.

Finally, in countries such as the Netherlands, where all pregnant women are offered a free ultrasound scan for structural anomalies at 20 weeks of gestation, charging for NIPT seems strikingly inconsistent. Despite morally relevant differences between the two screening tests (notably, although the 20-week ultrasound is aimed primarily at reproductive autonomy, it also aims to improve maternal health and pregnancy outcomes), we find it remarkable that NIPT tends to elicit ethical discussions, whereas the 20-week ultrasound does not.

In sum, funding policies should support prenatal screening programmes in achieving their aim of promoting reproductive autonomy. They should not be used to negatively affect uptake rates.

Rationale 2: charging women to improve informed decision-making

A second argument brought forward in public discussions for charging money for NIPT is that it will improve decision-making.38 A financial contribution to NIPT is thought to have the benefit of signalling to pregnant women and their partners that screening is optional: screening is an offer that may have far-reaching implications that should be considered beforehand.39 Because NIPT requires only a simple blood draw, just like other routine screening tests offered during the pregnancy, such as tests for HIV, hepatitis B, syphilis, blood type, Rhesus factor or antibodies, observers are concerned that women will thoughtlessly accept NIPT.12 Also, they may feel less justified in forsaking screening, as NIPT ‘removes the risk to pregnancy as a reason for declining testing’,40 and may experience societal pressure to take part in screening. Meeting the aim of reproductive autonomy is generally considered to require ‘informed choice’ for or against a screening offer. Participation in screening should be the result of such adequately informed, voluntary and value-consistent decisions,41 not of passive acceptance or acquiescence to societal pressure.

It is feared that because of the non-invasive character of NIPT, health professionals may treat the informed choice process differently—less stringently—than they would in the context of invasive testing, requiring less time to consider or not asking for written informed consent.42 NIPT would be presented by counsellors as a routine procedure and would consequently be perceived as such by pregnant women and their partners, a concern referred to as ‘routinisation’.43 If women may not appreciate the significance of the test, it would ‘become more difficult to achieve the aim of enabling autonomous reproductive choices’.12 In sum, in the absence of accepted reasons not to take part in first-trimester prenatal screening, such as safety or financial considerations, pregnant women may consider less thoroughly whether or not to take part. Also, state funding is believed to send a ‘legitimizing’ message about the importance of NIPT, implying that the government encourages screening,38 making pregnant women more likely to participate without deliberation.

Putting up a (small) barrier by charging women, on the other hand, so it is argued, may help reinstall well-considered decision-making.39 If women must pay €175, the fee required in the Netherlands, or the small sum of €8.68, the fee required in Belgium, for NIPT, they will deliberate the benefits, risks and implications of screening. Especially in countries like the Netherlands, where all ‘medically necessary’ healthcare services are offered free of charge, including the 20-week ultrasound scan, the copayment requirement may signal to women that NIPT is a different test, and help them understand that NIPT ‘is an offer that can be declined’.44 At the same time, however, it may signal that first-trimester screening is less relevant and lead women to (mistakenly) believe that screening is ‘not necessary’23 because of an assumed low risk of fetal abnormalities.

Thus, reimbursement policies are not neutral and may influence women’s choice behaviours. But is charging a substantial or a ‘symbolic’ sum an effective way to promote informed choices? Does it not have adverse moral implications? Are there no subsidiary and better ways to prompt women to make informed choices?

Although many women are willing to copay for NIPT,45 for some women, the costs of first-trimester screening withhold them from taking part.23 46 Personally incurred costs significantly influence pregnant women’s choices whether or not to undergo screening.47 48 For a majority of Canadian women (66.4%), costs have ‘a lot of impact’ (5 on the 1–5 scale) on their decision to use screening.11 When a prenatal screening offer is declined on the basis of financial constraints, in fact quite the opposite from the ideal of informed choice is being realised: women are not choosing for or against NIPT based on their values, but because of financial constraints.

To illustrate the caveat, imagine that an opposite policy would be proposed: women who do not take part in prenatal screening are asked to pay a fee of €175. Policy makers would claim that this fee was introduced to prompt women to more thoroughly consider their decision. The fee, however, will likely be perceived by pregnant women as a discouragement or a punishment for the decision not to take part. This policy would signal that participation in screening is the preferred option and may limit women’s freedom to decline screening, thus failing to promote informed choice. Strictly speaking, if a fee is considered instrumental in promoting informed choice, it should apply to both options (screening and not screening). For if reproductive autonomy is the justified aim of prenatal screening programme, both options should be considered equally valuable and equally acceptable. A fee should be asked for both options or none.

In sum, it is unclear how funding policies best serve reproductive autonomy. We have seen that there is no reason to assume that either a financial barrier or a fully reimbursed test will promote informed choice. To help women make choices regarding screening that are well informed, voluntary and consistent with their values, other solutions must be sought.

To make informed choices, women need time to become informed about screening, to talk to healthcare professionals and others, to imagine futures with children with disabilities, and to deliberate their options. Repeat discussions with healthcare professionals, over time, may be preferable to ‘only one point of contact’.3 Another requirement may be good information about the implications of screening, offered individually and/or collectively, and through multiple modalities, including written information material and audiovisual material, and—if requested—balanced narratives from parents of children with disabilities to illustrate the range of experiences of living with and caring for children with disabilities.49 Further, women may need to be assisted in explicating their values and in making decisions in accordance with these values. In the Netherlands, obstetricians and midwives are specifically trained to focus on deliberation in pretest counselling. Counsellors are expected to conduct 30 min dedicated face-to-face discussions with pregnant women to facilitate informed choice for or against the NIPT offer.50

To help increase choice awareness regarding first-trimester prenatal screening, pretest counselling may therefore need to focus on conveying key information about the aim and utility of prenatal screening, and foremost on the question whether women and their partners wish to start on the trajectory of reproductive decision-making (at all). The decision (not) to take part in screening should be based on women’s values, not on their financial resources—although pregnant couples may reasonably ask themselves whether they have the social, practical and financial means to care for a child with a disability. Health professionals should discuss with pregnant women and their partners the reasons why they would wish to use screening, and what they would do in case of abnormalities.50 Not making people pay, but offering adequate pretest counselling should thus be (part of) a solution to safeguard informed choice. The offering of value-based pretest counselling will likely be more effective in promoting reproductive autonomy than the asking of a copayment for NIPT.