For most forms of screening, participants benefit from the early detection of disease and timely provision of preventative treatment or therapy. However, this may not always be the case where concerning screening for fetal anomalies such as Down syndrome and neural tube defects. For these conditions preventative treatment or therapy may have only a limited effect or is perhaps unavailable altogether. As a consequence, couples may receive few practical courses of action other than to decide whether or not to terminate the pregnancy. This has prompted considerable debate over why prenatal screening for conditions that are generally not preventable might be offered in the first place (Clarke
1997; de Jong and de Wert
2015; Juth and Munthe
2012; Munthe
2015; van El et al.
2012; Wilkinson
2015). In relation to this question, several justifications are readily discussed within ethical debate. Generally speaking, these correspond to one of two conflicting frameworks: (1) where preferred reproductive choices may be promoted by the health service provider (a directive framework) and (2) where preferred reproductive choices should not be promoted by the health service provider (a non-directive framework). In the following section, justifications associated with either framework will be discussed.
The directive framework
During the early development of prenatal screening programmes that targeted fetal anomalies, prenatal screening was routinely offered for objectives that implied that couples
should participate in order to avoid the birth of an affected child (Centerwall
1970; Navon and Padeh
1971; Stein
1975; Stein and Susser
1971). This directive approach has been justified for three principle reasons. First, selectively aborting fetuses with conditions for which prenatal and perinatal prevention is generally not possible could help to avoid suffering for the future child (Clarke
1997; Green
1997). The emphasis of this appeal is on preventing future persons from having to endure particularly severe physical and psychological suffering that might be associated with some heritable or congenital disorders. Clarkeburn (
2000) argues that parents who are aware they are at risk may have moral (non-legal) obligations to participate in prenatal screening where concerning severe health conditions for which many might consider life not worth living. Clarkeburn suggests that only for conditions characterized by significant levels of intellectual disability and continuous non-palliative pain would it be reasonable to believe that non-existence is in the best interests of the future child (
2000).
The appeal to ‘avoid suffering’ is also used in another justification for offering prenatal screening. However, within this second justification, the concept of suffering does not relate to the wellbeing of the future child, but instead, concerns the psychosocial health of prospective parents and their family. The main concern relates to the anguish and grief that a couple may experience as parents of a child whose suffering cannot be prevented (Clarke
1997). However, unlike the previous appeal to avoid the suffering of the future child within this latter justification women have no moral obligations to consider screening. The offer may instead be viewed as a form of paternalism. This justification is often cited in support of offering screening for conditions that might qualify as a life not worth living. However, it may theoretically be applied to any condition where it is reasonable to expect significant levels of distress may be experienced by prospective parents. For example, the principle is also relevant in cases where couples (and their families) may primarily feel burdened by obligations towards providing care and support for their child, rather than, by the child’s suffering (Faden et al.
1987; Lippman
1991).
The third justification for offering screening for reproductive choice is that this may lessen the overall burden of disease on society (Clarke
1997; Juth and Munthe
2012; Stein
1975; Stein and Susser
1971; Wilkinson
2015). Unlike the personal appeals to avoid suffering, justifications based on the social utility of women’s reproductive choices are highly impersonal and only indirectly concerned with the wellbeing of each couple and their future child. The primary concern is that screening is organized in a way that maximizes its benefit to society (Wilkinson
2015). An extreme application of this principle can be seen within some economic evaluations of prenatal screening programmes. For example, in a critical review of the economic appraisal literature, Mooney and Lange (
1993) raise concern about the use of models that derive benefit from women electing to terminate an affected pregnancy (i.e. it is assumed there is no benefit from screening if women do not abort affected fetuses). Such models differ in their assessment of the women’s utility based on the condition for which screening is offered and the number of ‘healthy’ replacement pregnancies occurring after an abortion (e.g. 0, 1, or 1 < X). Mooney and Lange point out that within these models (
1993): “
[benefits] take the form of various savings in public expenditure (e.g. health services), in family expenditure on the child, in avoided lost maternal output and the child’s consumption of other goods and services” (
1993, p. 874). Accordingly, greater levels of directivity may be preferred when offering screening for conditions which require more expensive medical care and social support.
Counter perspectives
Objections to offering prenatal screening for fetal anomalies generally focus on the disproportionality of benefits and harms received by different stakeholders when preferred reproductive choices are promoted by the health service provider. These objections are associated with fetal rights, feminist, and disability rights perspectives (de Jong and de Wert
2015; Johnsen
1986; Parens and Asch
2003; Wertz and Fletcher
1993). From the fetal rights perspectives, the life of the unborn fetus is considered sacred. Abortion is therefore inherently wrong. Since prenatal screening ‘for reproductive choice’ provides couples with an ‘opportunity’ for an abortion, health services are thought to be complicit in this wrong. Whilst this applies to the provision of any opportunities for reproductive choice, when the opportunity is presented in a way that promotes the use of abortion (e.g. such as within an unsolicited screening offer as opposed to following personal enquiry) health services hold a higher level of responsibility for wrong doing. Screening for reproductive choice is therefore less objectionable when it does not influence the autonomy of couples’ reproductive decisions. From the most extreme fetal rights perspective, the fetus has a moral status equivalent to that of any adult person. Accordingly, abortion is generally viewed as the moral equivalent of murder. Screening for reproductive choice would therefore be highly problematic in all but a few very rare cases where either the life of the expectant mother is threatened or the life of the fetus would not be considered worth living (Clarkeburn
2000). Although this position is sometimes dismissed as religious dogma, it has been argued by appealing to the similarity of both developmental origins and potential futures jointly shared by the fetus and adult person (Gill
2005; Marquis
1989). In contrast, more moderate perspectives assign a lower moral status to the fetus based on growing biological and psychological similarities between the fetus, newborn, and adult. From this less radical perspective, the moral status of the fetus gradually increases throughout its development. Yet, greater emphasis is placed on later stages of pregnancy (Gillespie
1977; Steinbock
2011). Whilst abortion is still considered to be a controversy option, a considerably more lenient view is taken on when it might be acceptable, and therefore, when prenatal screening for reproductive choice might also be acceptable.
The disability rights perspective is primarily concerned with the issue of bias (Kaposy
2013; Reinders
2000). More specifically, why screening for reproductive choice might be offered for some conditions but not for others? In the context of prenatal screening for Down syndrome, some families affected by Down syndrome have argued that the condition does not prevent them from leading worthwhile and fulfilling lives. It has been suggested that the most significant source of suffering for many affected families is stigma, discrimination, and the general lack of inclusiveness within society (Brasington
2007; Cunningham
1996). In cases where suffering may be avoided through social interventions, offering screening for reproductive choice would not appear to be about serving the needs of the future child and/or prospective parents, but rather, about lessening the burden of disease on ‘the rest’ of society. If screening for reproductive choice is offered for this reason, it conveys a discriminatory message about people living with the condition (Holm
2008; Parens and Asch
2003). For example, in their article on the preventability of Down syndrome, Stein and Susser suggest that prenatal diagnostic testing should be offered to older pregnant women as one of four preventative measures to reduce the incidence of Down syndrome among new born populations. In support of this position, they problematize the increasing longevity of people living with Down syndrome, stating that “
But whatever is done, the survivors continue in a state of permanent dependence that imposes a severe burden on their families and on existing forms of social organization.” (Stein and Susser
1971, p. 650). They clarify “
The goal of public health in such a situation must be prevention, and preferably primary prevention, that is, the reduction of the incidence of the disorder by action taken before it becomes manifest.” (p. 651). Whilst it may be unintended, these statements convey a discriminatory message: ‘people’ with Down syndrome are a burden on ‘the rest’ of society, and therefore, unwelcome. However, prejudice may not always be conveyed overtly. Offering screening for reproductive choice may still be problematic if health services are organized inequitably. This might apply to screening that is offered in the context of diminishing investment in care and support for affected families, or alternatively, if access to abortion services is conditionally linked to a diagnosis of disability.
From a feminist perspective, any offer of prenatal screening for reproductive choice where preferred reproductive choices are recommended by the health service provider may threaten women’s reproductive rights and freedoms (Johnsen
1986). Reproductive decision making, especially when concerning abortion, should remain a voluntary and highly personal practice that reflects the biological role that women play during reproduction and takes into account the way that women experience pregnancy (Dondorp et al.
2015; Lippman
1991; HCN
2008; Rothman
1986; Wertz and Fletcher
1993). Any suggestion that women should participate in screening in order to avoid the birth of an affected child might pressure women into distressing and emotionally burdensome decisions which they may later come to regret. Such pressure might not only be the result of an explicit recommendation. It is also possible that health policy contributes to a coercive social context for making reproductive choices. For example, providing access to abortion services only in cases of disability or reducing investment in care and support for affected families may lead to social pressures towards making certain reproductive choices and not others. However, the feminist position is not categorically opposed to the offer of screening for reproductive choice. Instead it is suggested that many women positively value the opportunity that an offer of prenatal screening provides (Lippman
1991; van Schendel et al.
2014; Wertz and Fletcher
1993).
The non-directive framework
In view of these objections, international guidelines now recommend that screening for reproductive choice should only be offered within a framework of non-directivity. If screening for reproductive choice is offered within a non-directive framework it would seem much harder to claim that health services convey a discriminatory message about individuals with disabilities or promote the subjugation of women’s reproductive autonomy. This position is endorsed within guidelines for responsible screening published by health authorities in the UK, the Netherlands, and within many other Western countries (de Jong et al.
2011; Godard et al.
2003a,
b; HCN
2008). The two most characteristic features of this framework are that health services should adopt a position of neutrality with respect to the outcomes of couples’ reproductive choices (i.e. there are no preferred pre- or post-test choices) and should support couples in making informed and autonomous reproductive choices in line with their own values of whether or not to have an affected child (HCN
2008). For example, in the report ‘
Screening: Between hope and hype’, commissioned by the Health council of the Netherlands, it is argued that although screening may not always benefit participants in terms of improved health outcomes, participants may still derive some (personal) utility through the provision of reliable information upon which an informed and autonomous reproductive choice can be made (
2008). This concept of utility differs from that adopted within the directive framework which is mainly focused on the utility of reproductive outcomes. The directive framework is broadly based on normative criteria first articulated by Wilson and Junger in 1968, before prenatal testing for fetal anomalies was widely available (Andermann et al.
2008; Wilson and Jungner
1968). Wilson and Junger endorse the use of a conservative concept of utility that is primarily about preventing disease through early detection and timely provision of treatment or therapy. Screening programmes with this aim are typically assessed in terms of the overall reduction in mortality, morbidity, and quality of life. In contrast, the concept of utility applied within the non-directive framework is about providing couples with opportunities for
meaningful reproductive choice; generally understood as informed and autonomous reproductive choices of whether or not to continue with pregnancy, that enable couples to avoid suffering they anticipate for themselves and/or their future child (de Jong et al.
2011; Dondorp et al.
2010; Wilfond and Thomson
2000).