The Debate About Moral Status

On what basis can we establish whether professionals (especially obstetricians and maternal-fetal medicine specialists) do have responsibilities and obligations toward a fetus independently of what they owe to the pregnant woman? It would seem that this requires a prior answer as to what the fetus is, in moral terms. This leads, however, into a conundrum of ethical debate. What meaning should be given to both the continuity (fetuses are beginning forms of human life) and the discontinuity (they still lack most of the defining characteristics of human beings)?

Very different answers to this question have been given. For instance, according to the Roman Catholic Church, the continuity is the morally decisive factor: being destined to become fully developed human beings (or persons) is what gives human embryos and fetuses the same high moral status as should be accorded to all human beings. As ‘potential persons’ (in this strong sense of the term), they deserve full protection as from conception. Although basically following the same reasoning, Judaism and Islam differ from Roman Catholic teachings in taking the moment of ‘ensoulment’ (following Aristotle, this is often set at 40 days for male fetuses) as the starting point of a human life with full moral status.

By contrast, secular philosophers and ethicists have tended to stress the discontinuity. What makes human beings especially worthy of respect and protection is that we are persons in the sense of beings with capacities for the ‘complex forms of consciousness’ that allow us to be ‘self-interpreting animals’. Clearly, this does not hold for embryos or fetuses. Although late-gestation (sentient) fetuses may well have interests, for instance, in being protected from pain and perhaps even a (weak) interest in continued existence, they are not persons and therefore do not commend the same level of respect and protection. Still, according to many authors, the capacity to develop into a human person is morally relevant and gives embryos and fetuses a certain moral standing, although lower than that of persons. This is often thought of as increasing with fetal development, referring to the development of the necessary conditions for later personhood (e.g., brain development capable of sustaining consciousness).

A challenge for this reasoning is to explain why birth should make such a difference. Clearly, looking at how personhood is defined, not only fetuses but also infants seem to fall short. Still, they are mostly regarded as sharing the full moral status of persons. And indeed, even prematurely born infants are regarded as such, whereas (on the present reasoning) more fully developed near-term fetuses are not. Building on the work of Joel Feinberg and others, Carson Strong argues that infants have a ‘conferred’ moral status, ascribed for social reasons to ‘near persons’ on the basis of similarity to the paradigm. This, he says, would apply to infants and to a lesser degree also to late-gestation fetuses: ‘We might say that advanced fetuses have a conferred right to life, but one that is not as strong as that of infants’. However, others have defended biting the bullet that both fetuses and infants fall below the threshold of respect for persons.

Because this is a longstanding and ongoing debate between positions that depend on diverse and often irreconcilable (religious and secular) worldviews, it seems unlikely that consensus can ever be reached about what, if anything, is owed to a fetus at what precise stage of its development. What does that mean for the normative framework for maternal-fetal medicine? As a way out, ethicist Laurence McCullough and obstetrician Frank Chervenak have suggested that we can simply bypass this whole intractable debate and still regard a fetus a patient also in a normative sense of that term. Because they have built an influential theory on the idea that clinicians in this field have responsibilities to both their pregnant and fetal patients, we will discuss their view in more detail.

The McCullough and Chervenak Model

According to McCullough and Chervenak, a fetus need not have a prior moral status to be regarded as a patient, but conversely: if a fetus can benefit from medical treatment, it is a patient and as a patient it has a ‘dependent moral status’, dependent, that is, upon the social role of being a patient. The crucial step is that the fetus is presented for medical care that can reasonably be expected to benefit from it. This notion of fetal benefit, as McCullough and Chervenak explain, requires the existence of ‘links’ connecting the fetus to the person with independent moral status it may later become. The reasoning here is that ‘achieving independent moral status is among the goods that humans value. . . . As a consequence, the fetus reliably linked to later achieving independent moral status has present interests in the . . . necessary and . . . sufficient conditions for later achieving [that] status’. Viability, they say, is one such link, given that from this stage onwards, the fetus can survive into the neonatal period with adequate technological support. With regard to previable fetuses, the existence of the required link would depend on whether the pregnant woman intends to carry the pregnancy to term and makes the fetus a patient by presenting it into the care of a professional.

McCullough and Chervenak use the term ‘beneficence-based’ obligations to distinguish what obstetricians owe to their fetal patients from the ‘autonomy-based’ obligations that can only be owed to (competent) persons. Obstetricians, they say, have autonomy-based as well as beneficence-based obligations to pregnant women in their care, but with regard to fetuses, their obligations are beneficence based only, as is the case with regard to neonates or young children. Because a fetus can only be treated through the woman’s body, her consent will, of course, be needed. Although the authors acknowledge that the pregnant woman may have legitimate interests ‘not to be obligated to take unreasonable health risks’ to allow the fetus to be treated and that clinicians have autonomy-based obligations to respect the woman’s choices in this regard, the qualifier ‘unreasonable’ indicates that there may be cases in which the balance is such that pregnant women can be morally expected to accept reasonable burdens and risks.

The reasoning behind this claim is that whereas with regard to a previable fetus it is entirely up to the woman to autonomously decide whether or not the fetus should be presented for medical treatment, her freedom to make the same decision with regard to a viable fetus is limited by the fact that a viable fetus with the capacity to later become a person has an independent interest in the fulfilment of the conditions for this achievement. According to McCullough and Chervenak, this would create a moral obligation for the pregnant woman to present the fetus for medical treatment and for the clinician to propose and provide such treatment whenever there is an intervention that would clearly promote and protect the interests of the fetus without disproportionately putting the woman at risk. In such cases, clinicians should not simply take an informed refusal as the end of the story but may need to move from information to negotiation and ‘respectful persuasion’, if necessary involving the aid of an ethics committee, to try to convince the woman that she has a moral obligation to allow the fetal patient to be treated.

The Fetus as a Patient: Where Does That Leave the Pregnant Woman?

A recurrent theme in the (feminist) critique of the fetal patient terminology is that it conceptually separates the fetus from the woman in a way that is not only at odds with the reality of pregnancy but also threatens the position of the pregnant woman as a patient in her own right. In a commentary on an early legal case in which criminal charges were filed against a woman who, after having neglected medical advice, gave birth to a severely brain-damaged child, George Annas has minted the ‘fetal container’ metaphor to powerfully illustrate this concern: ‘Favouring the fetus radically devalues the pregnant woman and treats her like an inert incubator, or a culture medium for the fetus’. In a classical sociological study of the early history of fetal surgery, Monica Casper observes that this is not far apart from the language actually used by some of the pioneering surgeons. In this field, she says, ‘the interests of the fetal patient are regarded as paramount and pregnant women are conceptualised either as inert tools for enhancing fetal access or, conversely, as barriers restricting fetal access. Pregnant women’s autonomy in such a framing may be severely diminished’.

Of course, there is nothing in the notion of the fetus as a patient that would necessitate this problematic framing in which the pregnant woman either eclipses behind the fetus or is expected to assume the role of a self-sacrificing ‘heroic mom’. However, putting a second patient next to her inevitably leads to the question whose interests are to be regarded as overriding in cases of conflict. A radical stance is taken by Elselijn Kingma, who argues that because no firm physical boundaries can be drawn between the pregnant woman and the fetus, the fetus should be understood ‘as part of the pregnant organism’. As she says, there is ‘one organism throughout the pregnancy and only at birth does this organism split and becomes two organisms’. In this view, anything that affects the fetus, be it the woman’s behaviour or medical treatment, affects the ‘pregnant organism’ as a whole. Accordingly, it would be impossible to say that clinicians have distinct obligations towards the pregnant woman and her fetus.

In an insightful earlier discussion, Susan Mattingly has made clear that the alternate view argued for by Kingma is in fact the understanding that was dominant in obstetrics in the era preceding the advent of high-resolution ultrasonography: ‘Unable to interact with the fetus in clear distinction from its host, physicians conceptualised the maternal-fetal dyad as one complex patient, the gravid female, of which the fetus was an integral part’. Mattingly does not suggest that also in the present era of the transparent womb, this traditional one-patient understanding should still guide our ethical thinking. However, she points out that ‘Ironically, when the fetus is construed as a second independent patient, physicians’ prerogatives to act as fetal advocates are actually diminished’. This is because ethics codes relevant to the doctor–patient relationship consistently rule out counselling patients to accept treatment against their will to benefit another patient. Think of living tissue donation as a context to illustrate this claim.

Others have similarly argued that a ‘two-patient view’ seems difficult to reconcile with what patienthood as a normative concept entails in terms of professional duties, as in cases of conflict, it may be impossible for the clinician to fulfil his or her obligations (including nonabandonment) to both patients. Anne Drapkin Lyerly and colleagues use the example of tragic cases in which a continued pregnancy would entail a significant threat to maternal life, to bring out what they call the inevitable ‘normative asymmetry’ between the fetus and the pregnant woman. If the fetus were a patient in the same sense as the woman (normative symmetry), it would not be obvious what clinicians in such cases should recommend. Here again, the concern of these authors is that with the fetus understood as a second patient, doctors may feel justified to pressure women to allow them to treat that patient through their body.

McCullough and Chervenak may respond – as they have done – that precisely because the fetal patient is not separate from the pregnant patient, normative symmetry between two independent patients is not implied in their framework. They do not say that the interests of the fetus should be of equal weight as those of the pregnant woman or that her reasons for rejecting a proposed treatment should not count. However, the point remains that in their view, the clinician’s understanding of the relative force of his or her obligations to both patients determines what the outcome of a possible conflict should be.

Why the McCullough and Chervenak Model Is Flawed

The fact that the McCullough and Chervenak model captures the widely held moral intuition among professionals in the field that they do indeed have to deal with two patients, while allegedly steering free from contestable moral presuppositions about the status of the fetus, may explain its unabided influence in the field of maternal-fetal medicine and the relevant literature. However, the model has invited fundamental philosophical criticism. As Joan Callahan has made clear in her review of McCullough and Chervenak’s book Ethics in Obstetrics and Gynecology , their reasoning is flawed precisely on the point where they suggest to be able to circumvent the intractable philosophical debate about moral status.

Callahan observes that the only way to make sense of the statement that a viable fetus has interests deriving from its capacity to later become a person is to understand it as a version of ‘the argument from potential personhood’, which is in fact a position in the very debate that McCullough and Chervenak wanted us to forget about. A problematic version to be sure, as there is no good reason why the capacity to later become a person and insofar to be able to benefit from treatment would depend on viability. But more fundamentally, what becomes clear at this juncture is that notwithstanding their repeated claims to the contrary, underlying their theory is an account of fetal interests that deserve protection by the pregnant woman and her clinician. Strong makes the same point when saying that McCullough and Chervenak simply ‘beg the question’ when speaking about a woman’s obligation to present her viable fetus for medical care. Obviously, it is as a potential person that the fetus deserves to be treated as a patient. In other words: moral status precedes patient status, rather than the other way around. How indeed could it be otherwise? To quote Stephan Brown: ‘Anyone who does not already believe that fetuses deserve protection (except as requested by the parents) will reject the authors’ view that the clinician has duties of beneficence to it. The proposal to designate the fetus a “patient” would change nothing’.

Why is this important? It is important because, as the McCullough and Chervenak model remains influential in the field, it may be used to constrain women’s right to autonomously control what happens to their bodies for reasons resting on a questionable footing. Precisely because McCullough and Chervenak are right when saying that the debate about the status of the fetus is heavily loaded with religious and other worldview-dependent presumptions, the fact that their model does not succeed in sidestepping that debate renders it a problematic basis for defining the moral duties of the parties involved. If accounts of fetal moral status are fundamentally contestable, the same goes for normative accounts of fetal patienthood that explicitly or (as in the case of the McCullough and Chervenak model) tacitly depend on it. From the fact that the clinician may hold views about the status of the fetus that require him or her to propose medical treatment to benefit it or to save its life, it does not follow that the woman can be expected to agree with those views and to concur that she is under an obligation to allow the proposed treatment to proceed through her body. Neither does it follow that an ethical case can be made for ‘respectfully persuading’ her towards the clinician’s point of view, let alone for coercing her through a court order.

The Interests of the Future Child

What follows from this? Should we say that in maternal-fetal medicine, there are no clear moral interests at stake that we can agree about beyond those of the woman? And that the relevant choices for clinicians should therefore be framed in terms of what they owe to their pregnant patients only, both in terms of beneficence and respect for patient autonomy? Although that is what some women’s rights advocates would defend, it ignores the perspective of parental and professional responsibilities towards the future child. For if the pregnancy leads to a child, this will be a person whose interests can be undermined or promoted by what happens to the fetus during pregnancy. As has been argued by several philosophers, including Joel Feinberg and Thomas Murray, the fact that those future persons are not yet born is irrelevant: the point is that if they are allowed to be born, they will then have interests that should already count during pregnancy. Importantly, the moral responsibilities (of both pregnant women and professionals) connecting to those interests do not depend on gestational age; the interests of the future child count as much in early pregnancy as they do after viability. Concerns that acknowledging this would undermine women’s right to have a termination are mistaken. For if she has an abortion, there will be no child whose interests can be harmed or promoted by her choices or those of the clinician. But if she decides to carry the pregnancy to term, the interests of what Murray calls ‘the not-yet-born-child’ may provide an independent reason for her obstetrician to propose and for herself to consider (established forms of) fetal treatment, apart from how she would define her own interests in this regard.

Compared with accounts based on fetal interests and fetal moral status, an important difference in terms of implications for obstetric practice is that reasoning from the interests of the future child does not lead to a moral imperative to try to save the life of the fetus for its own sake. This is because the death of the fetus does not affect the interests of the child. Of course, professionals can still be morally required to do what is reasonably possible to save the life of the fetus for the sake of the woman if that is her informed and well-considered choice ( Table 15.1 ).

This is not to say that the interests of the fetus-as-fetus should not count for what they are. The observation of a stress response to potentially noxious stimuli in midgestation fetuses suggests that these fetuses may perhaps feel pain. It is therefore only appropriate that potentially ‘painful’ surgical procedures are accompanied by pain relief measures. Because there is evidence that experiences of stress or pain will be ‘remembered’ by the nervous system in later life, taking these measures also serves the interest of the future child.

Rationale of Offering Fetal Treatment

The ‘no equally effective postnatal treatment’ criterion can be met in two types of cases, reflecting two different reasons for offering fetal treatment:

• 1.
  

  Lethal conditions that without in utero interventions lead to high rates of fetal or perinatal mortality. Accepted examples include intrauterine blood transfusion for fetal anaemia, thoracoamniotic shunting in fetuses with thoracic lesions complicated by hydrops, laser coagulation in case of twin-to-twin transfusion syndrome and administration of corticosteroids before imminent preterm birth. Other treatments are considered experimental, such as vesicoamniotic shunting for fetal obstructive uropathy. For some prenatal interventions that were developed in the early days of the field, improved survival after postnatal treatment has led to making this a better alternative. For instance, fetal surgery for congenital hernia diaphragmatica (CDH) has been replaced by postnatal correction, with only a small poor prognosis group remaining eligible for experimental fetal treatment in the form of fetoscopic trachea occlusion. Improvements in critical neonatal care have made it possible in certain conditions to consider the option of inducing premature birth so as to allow lifesaving postnatal treatment. The latter approach has the benefit of avoiding maternal complications, but fetal treatment may avoid some of the otherwise unavoidable prematurity and its effects on the prognosis for the surviving children.

  
  
• 2.
  

  Nonlethal conditions in which prenatal treatment leads to better health and quality-of-life outcomes for the future child than can be expected without treatment or with postnatal intervention. An example is in utero repair of spina bifida so as to avoid the effects of prolonged exposure of neuronal tissue to amniotic fluid. A similar rationale of timely preventing irreversible health effects is behind other still experimental interventions, such as dietary treatment with the aim of avoiding restricted prenatal brain development in fetuses with 3-phosphoglycerate-dehydrogenase deficiency, a rare metabolic disorder. Further examples on the brink of clinical studies include in utero stem cell therapy for osteogenesis imperfecta, building on the concept of intervening in the still preimmune fetus, before permanent damage is done, and pharmacotherapeutic treatment aimed at timely reversing abnormal brain development in fetuses with Down syndrome. A possible future development is in utero gene therapy, for instance, for haemophilia A.

Giving the Fetus ‘a Chance for Life’?

An ethical pitfall of the first type of fetal treatment (aimed at avoiding in utero or perinatal death) is that it invites the acceptance of any possible risks if there is no other way to save the life of the fetus or the neonate. This ‘ultima ratio’ reasoning was pervasive in the pioneering phase of open fetal surgery in the early 1990s, driven both by the belief of the clinicians that it was their medical duty to use these techniques to save the life of the endangered ‘fetal patient’ and the desperation of pregnant women feeling a strong need to have done all they could to protect the fetus. This constellation may have led clinicians to propose disproportionally risky procedures and their patients to accept them on the basis of what may have been less than fully informed consent. It also did not promote a commitment to evaluate the benefits and risks for those ‘innovative’ procedures in proper clinical research. The concern about this was again raised in the 2011 recommendations of the American College of Obstetricians and Gynecologists (ACOG) together with the Academy of Pediatrics (AAP), stating: ‘Although the first few uses of a new intervention may be motivated by a desire to help particular fetuses, once feasibility and potential benefit have been identified, innovations should be subjected to systematic formal research as soon as feasible’. The document stresses that a comprehensive evidence-based approach to offering prenatal treatment is essential to enable pregnant women to make truly informed decisions and to help them overcome the misguided belief ‘that there are only two possible results: success (fetal cure) or failure (fetal death)’.

To avoid this one-dimensionality, women should be properly informed about what is known (or still unclear) about all possible outcomes. First, this includes the risks to themselves. Depending on the nature of the intervention, these range from small (as in the case of a needle for transfusion) to serious (as in the case of open surgery), possibly also affecting future pregnancies (as in the case of hysterotomy scars). Second, prospective parents confronted with a diagnosis of a lethal disorder should be aware that the option of lifesaving fetal treatment may come at the price of giving them a child with possibly severe health problems or disabilities. These may either result from the disorder that was the reason for the intervention or be caused by the procedure, for instance, when very premature birth leads to neurodevelopmental disabilities. In either case, the outcome for the parents is a child with a compromised quality of life that without the intervention either might not have been born or might not have survived beyond the neonatal period. As Ray Noble and Charles Rodeck remark: ‘It is tempting to conclude that a fetus should be given a “chance for life”. . . . This runs on the concept that any chance of life is better than none. However, a partial success in such cases might lead to greater prolonged suffering in the offspring and greater psychological and socioeconomic burdens on the parents’.

Saving the Fetus at What Price to the Child?

What about the perspective of the interests of the future child in such cases? Suppose that fetal treatment for a lethal condition comes at the price of a severely disabled child? Should one not say that in such cases, the child has been harmed by the intervention? How would this affect the acceptability of the procedure? Clearly, on one of the ‘moral status’ views briefly referred to at the beginning of this chapter, saving the fetus equals saving the child. This means that if unavoidable, even serious remaining or procedure-related health problems or disabilities will be outweighed by the child’s survival, provided the child’s life is still worth living. But what about the alternative view that children and adults are persons but fetuses are not? Here saving the fetus equals bringing a person into the world who otherwise would never have existed. There is, of course, no moral requirement to do so. Here the question is rather if it is morally acceptable. Isn’t it morally problematic to save the life of the fetus if the unavoidable result is a child with a poor quality of life? Depending on how one thinks about the moral status of infants, the same question may also emerge if fetal treatment brings about neonatal survival leading to a life with compromised health prospects. For instance, vesicoamniotic shunting for fetal obstructive uropathy rescues the child into a life of often severe renal insufficiency.

This question connects to a more general debate about the welfare of the child in (assisted) reproduction. In their paper ‘When is birth unfair to the child?’, Bonnie Steinbock and Ron McClamrock have argued that the principle of parental responsibility requires refraining from reproduction unless one’s children will at least be able to have a minimally decent life. Taking the same perspective, guidance documents for professionals working in assisted reproduction state that they have a responsibility to take account of the welfare of the children that they cause to exist. This captures a widely shared intuition about responsible reproduction that also seems to be behind the concern in our debate about whether saving the fetus may entail harming the child.

However, it is not obvious that a child can be harmed by being brought into existence if that is the only existence she or he could possibly have. The point here is that any conceivable better life would be the life of a different child. It is still possible that the child has been harmed by those responsible for bringing him or her in a ‘harmful state’ but only if his or her life was so horrible that any rational being would rather not have existed at all. According to Feinberg, one should think here of rare cases in which because of very severe abnormalities, all the child’s possible interests are ‘doomed to defeat’. Above this ‘subzero quality of life’ bar, bringing a child into existence with significant health problems or disabilities does not entail harming the child.

The upshot of this is that regardless of whether we regard the child as having his or her life saved by fetal treatment or being brought into existence as a result of it, the child’s interests count against the intervention only if any unavoidable health problems or disabilities are so serious as to make his or her life not worth living. This means that it will only rarely be the case that unavoidable high offspring risks outweigh the woman’s self-declared interests in saving the fetus and having a living child even with serious disabilities. Those who regard this as counterintuitive must ask themselves if they would also be willing to consider terminating the pregnancy to protect the child from a poor but above ‘subzero’ health outcome.

Of course, the above is not a justification for accepting avoidable offspring risks. There can be no debate that it does harm a child to be brought into existence with health problems or disabilities if they could well have been avoided through more careful treatment. For in this case, there would have been the possibility of a less compromised existence for this child.

Giving the Child a Better Life

The broadening of the field to also include nonlethal conditions requires evidence that choosing fetal treatment instead of intervening (or not intervening) after birth gives the child a better life without exposing the pregnant woman to disproportionally high risks. This requires a long-term evaluation perspective that reflects the field’s commitment to evidence-based fetal treatment. An important milestone in this connection is the Management of Myelomeningocele Study (MOMS). This multicentre randomised controlled trial (RCT) of open fetal surgery for spina bifida has clearly established the value of this approach over postnatal surgery in terms of a reduced need for a hydrocephalus shunt by the age of 12 months and significantly improved mental and motor function scores at 30 months of age. Preliminary follow-up data suggest improved ambulatory status also at 10 years of age. However, the MOMS trial also confirms that fetal surgery comes with high rates both of serious maternal complications and preterm birth (13% before 30 weeks). Although minimally invasive endoscopic surgery would theoretically seem to promise lower complication risks, a recent meta-analysis found evidence for the opposite. Based on the MOMS trial findings, the ACOG has recommended that women with fetuses meeting the inclusion criteria of the trial should be ‘made aware of the findings’ and counselled accordingly, while stressing ‘the potential for significant morbidity and possibly mortality, even in the best and most experienced hands’. The ongoing MOMS 2 study compares the long-term effects of prenatal and postnatal surgery both on the child’s health and well-being and on the future reproductive health of the mother.

Before the MOMS trial, the idea of fetal treatment for nonlethal conditions such as spina bifida has invited two kinds of ethical criticism. First, it has been argued that the proportionality of surgical interventions would be more problematic in the sense of higher order risk profiles being less easily outweighed by the supposedly lower benefits of such treatment. As stated by Lyerly and colleagues, ‘it is difficult to justify risking maternal or fetal morbidity or fetal demise in attempts to reduce the chances of a woman having a child with a disability’. The trial has only confirmed the concerns of these authors about the high risks of open fetal surgery. In the light of the findings and the need for more follow-up data, it is certainly not obvious that the procedure can be regarded as proportional. But why would this be a more problematic state of affairs when the aim is to give the child a better life rather than if (with other forms of fetal surgery) it is to save the life of the fetus? If the fetus is not a person but the future child clearly is, it would seem that the opposite may well be defended. However, precisely from the perspective of the interests of the future child, there is still a reason for considering the proportionality balance as more precarious in fetal treatment for nonlethal disorders. Whereas with regard to lethal disorders, the burdens of any unavoidable iatrogenic health problems or disabilities will be outweighed by the value for the child of a life still worth living (see above), here such outcomes must be outweighed by an overall better quality of life. If not, fetal treatment actually harms the child.

Second, it has been argued that the option of fetal treatment for conditions involving a disability may be offending to people living with these conditions, sending the ‘derogatory message’ that their lives are of insufficient quality. This ‘expressivist argument’ plays an important role in the so-called ‘disability rights critique’ of prenatal diagnosis and screening for fetal abnormalities. In this context, the argument is used to question the acceptability of prenatal testing to enable selective termination of fetuses with abnormalities such as spina bifida or Down syndrome. In the context of fetal treatment, the argument is directed against what is felt as an only conditional (parental or societal) acceptance of a child with a disabling condition. For instance, Lyerly and colleagues have suggested that instead of proposing fetal surgery, professionals should help women ‘understand that carrying a child with spina bifida to term is a possible and acceptable option’.

Underlying the disability rights critique is what has been called the social model of disability, which focuses on sociocultural barriers to equal participation of people with impairments. Following this view, if anything is in need of change, it is not people with disabilities but society’s failure to properly support them. Although the argument has been invoked with regard to fetal surgery for spina bifida, it is difficult to see how it would apply here without also problematising standard postnatal surgery for this condition. And indeed, the suggestion that to fully accept their disabled children, parents should reject accepted medical treatment that will improve their health and well-being is simply absurd. But it is not unreasonable to expect that the disability rights critique will play a role in the societal debate about the prospect of fetal treatment for Down syndrome aimed at improving neurocognitive outcome, for which the first trial has started.

The rationale for fetal neurocognitive treatment for Down syndrome consists of two claims: first that interventions leading to a higher intellectual quotient (IQ) in children with Down syndrome will benefit these children and their families and second that such interventions will be most successful if performed prenatally. With regard to the first claim, although abnormalities in virtually every organ system, except the brain, are routinely treated in children with Down syndrome, intellectual disability remains a key aspect of the condition. In a recent study, parents of children with Down syndrome were found to have mixed feelings about the hypothetical scenario of a (postnatal) treatment that would mitigate or completely reverse intellectual disability in their child. Many respondents rejected the idea that a ‘cure’ for Down syndrome would be desirable, arguing that the problem is with societal acceptance of diversity rather than with their child’s level of functioning. Several parents also objected that neurocognitive treatment would change their child’s personality. However, many others welcomed the promise of greater independence for their child and the resulting improvement of the quality of life both for the child and the family.

It is certainly true that society should be more inclusive of people with disabilities such as Down syndrome. However, the social model of disability is one sided in that it reduces their difficulties to prejudice and exclusion. It is problematic when this leads to denying people the opportunity of profiting from treatment that will enhance their autonomy by giving them greater control over their lives and improve their well-being also by diminishing the impact of a constant source of frustration.

Given that there are sufficient ethical considerations in favour of developing neurocognitive treatment for people with Down syndrome, the argument for fetal treatment (the second claim) is that better results are to be expected than postnatally. Based on animal research, it is expected that in utero drug therapy may lead to a timely reversal of the development of abnormal embryonic brain phenotype in fetuses with Down syndrome. Current research aims to identify safe candidate drugs. This is expected to lead to (further) human clinical trials in the coming years.

In addition to safety and effectiveness studies, long-term follow up will be needed to confirm that, on balance, the availability of fetal treatment for Down syndrome is indeed beneficial for those concerned. Clearly, the ‘change of personality’ objection would not seem to apply to fetal therapy. In fact, several respondents in the quoted parental attitude study said they might have considered treatment at or before birth, when their child’s personality was still to be formed, but not later in its life. But other concerns connect to the fact that even with a significant improvement of neurocognitive functioning, a comprehensive ‘cure’ for Down syndrome will not be achieved. For instance, it may be that a partial improvement in cognitive functioning will make persons with Down syndrome only more aware of not being able to fully participate in society or to realise the professional and reproductive options open to others. Moreover, to the extent that fetal therapy for Down syndrome would bring the IQ of some people with Down syndrome into the typical range, they would still be physically recognisable. How would this affect their social functioning and acceptance?