4.2.1 Substantive Rights: Effective Access to Prenatal Testing

This section does not propose to explore the vast and well-trodden debate on women’s right to abortion in international law.Footnote ²⁴ Rather, it considers whether, in jurisdictions permitting abortion (which includes nearly all ECHR States),Footnote ²⁵ expectant parents have a right to request prenatal testing, so as to be able to terminate a pregnancy in the event of foetal abnormality. In addition to the tension between maternal and foetal interests inherent in the general abortion debate, this narrower issue raises a specific bioethical dilemma: whether procreative freedom includes the right to screen for disability, and whether that right can be curtailed to accommodate superior values connected with public morals or the interests of others.

Access to prenatal tests enabling the choice of therapeutic abortion is arguably grounded in the value of autonomy in the most intimate sphere of a person’s life. In fact, autonomy often encompasses ‘affirmative demands’ for measures ‘fostering autonomous decision making’.Footnote ²⁶ Perhaps counter-intuitively, testing for foetal abnormality may also be seen as having a strong negative liberty component. Emily Jackson thus noted: ‘Forcing a woman to carry, deliver and bear responsibility for a child that she does not want could be characterised as a potentially harmful interference with her interest in making significant decisions about her life according to her own values.’Footnote ²⁷ A right to prenatal diagnosis, as a precondition for procreative choice, is arguably covered by the notion of self-determination. Moreover, justifications for interferences with this right based on ‘the rights of others’ are doubtful. The foetus is unlikely to be a beneficiary of the right to life; indeed, such a stance is not supported by ECHR case law.Footnote ²⁸ John Robertson has pointed out that ‘a previable fetus has not yet reached a stage of development at which it has interests in itself’, insofar as ‘it lacks the neurological capability for sentience’.Footnote ²⁹ A foetus is, nevertheless, an entity which deserves legal protection.Footnote ³⁰ However, its interests are not capable of justifying coerced pregnancy and the denial of the right not to be a parent. The woman’s right to autonomy (bodily self-determination but also procreative choice) prevails over foetal interests, at least when her physical or psychological health is affected by the continuation of the pregnancy. Even accepting the existence of limited rights for pre-sentient human tissue, the dependence of the foetus upon the pregnant woman to acquire life means that any conflicts of rights must be resolved in favour of the latter. Elizabeth Wicks has convincingly argued that a viable foetus is entitled to the ‘special protection accorded to the human species’, regardless of consciousness, but that that protection does not guarantee ‘the right to the use of another’s body’.Footnote ³¹ While the Strasbourg Court has refused to take a stance on the legalisation of abortion, this was based on the State’s wide margin of appreciation rather than on the Court’s own assessment of the comparative weight of foetal rights and expectant women’s self-determination rights.Footnote ³² Rulings concerning the rights of fathers of unborn children have further established that the expectant woman cannot be compelled to carry the pregnancy to term, even when the abortion did not respond to a medical necessity, because the woman is ‘the person primarily concerned by the pregnancy and its continuation or termination’.Footnote ³³

Another ‘rights of others’ argument put forward by the opponents of therapeutic abortion is the impact of negative selection on existing children of the family affected by the medical condition the parents seek to avoid. Roy Gilbar wrote: ‘a question arises as to how a child with deafness, albinism or dwarfism might feel if his/her mother decides to terminate a pregnancy when the risk of having another child with one of these medical conditions is high.’Footnote ³⁴ This argument does not have the weight required for a cogent justification under Article 8(2) ECHR. Firstly, there is no reason for parents to inform their children about adult reproductive decisions, or for insensitive disclosure in later life. Secondly, counselling can help a child distinguish the parents’ desire to facilitate the life of future children from the love towards existing disabled children. Thirdly, children are often the product of an unwanted pregnancy, and this does not diminish their parents’ love for them; it only means that the circumstances surrounding the birth were inconsistent with the parents’ family life plans. In any event, the distress potentially suffered by an existing child with the avoided disability cannot outweigh the individual right not to reproduce, if reproduction entails foreseeable harm for the future child and significant burden for the parents.

It can be conceded that society at large may have an interest in upholding certain core values pertaining to the treatment of human genetic material. However, the ‘protection of morals’ in Article 8(2) cannot extend to the view that all eugenic practices are impermissible, as this would lead to overbroad restrictions. State-led policies seeking to alter the composition of the human gene pool through coercive measures, such as forced sterilisation, are morally objectionable. By contrast, individual decisions about future offspring, motivated by the desire to promote the welfare of the child and of the family, only reduce the incidence of genetic disorders in the population indirectly, rather than by design, and by a small margin.Footnote ³⁵ Furthermore, one needs to be particularly suspicious of arguments based on ‘public morals’ when a measure severely affects the private sphere of an individual’s life. ‘Morals’ are forged by majority opinion rather than objective criteria, and that opinion is often not informed by first-hand experience; indeed, many issues decided by the majority only affect a minority of the population. In addition, the values of tolerance and broadmindedness underlying the ECHR command respect for private opinion.

The community’s widespread belief in the moral status of the foetus could be more credibly adduced under ‘public morals’. Even so, the mere existence of a legitimate aim for restricting access to prenatal diagnosis does not suffice; the proportionality of an interference with parental choice with life-long implications remains critical to its legitimacy. As Robertson has pointed out, the ‘symbolic cost of ending a fetus’s life’ (which may, admittedly, be seen as ‘devaluation of human life’) is justified by the woman’s freedom ‘to avoid the special burdens of having a handicapped child’.Footnote ³⁶ Prenatal tests allow a woman to decide if continuing the pregnancy will offer the meaningful experience that makes procreation a human right. Denial of access to information enabling that decision has a disproportionate impact on the potential mother, for whom the stakes are different when compared to the public at large.

The jurisprudence developed under Article 8 ECHR has recognised – in the context of claims for compensation for medical negligence in prenatal care leading to the failure to detect foetal malformations – that this provision protects ‘the parents’ desire to conceive a child unaffected by a genetic disease, this choice being a form of expression of their private and family life’.Footnote ³⁷ Ambiguities remain as to the exact scope of obligations in this respect. While the relevant judgments tend to address discrete and often country-specific aspects of the regulation of prenatal diagnosis and therapeutic abortion, several important principles have emerged.

In a landmark decision on reproductive rights in the case of R.R. v. Poland,Footnote ³⁸ the Strasbourg Court established States’ positive obligation to effectively implement domestic laws affording access to timely diagnostic services, so as to detect foetus abnormalities and allow individuals to make an informed decision on therapeutic abortion. According to the judgment, Article 3 and Article 8 rights are breached when practical obstacles prevent expectant parents’ access to the diagnostic services available, impacting their ability to decide on the continuation of the pregnancy within the timeframe for legal abortion, with grave consequences for their private life. The tragic facts of the case invite a reconsideration of any sceptical rebuff of antenatal diagnostic techniques or of suggestions that they allow parents to exert whimsical choice. An expectant mother of two, carrying a foetus suspected of suffering from a severe genetic abnormality, was intentionally denied access to prenatal genetic tests (to which the law entitled her) by doctors and hospitals opposing abortion. The results of the amniocentesis were released to the applicant six weeks after the ultrasound scan indicating that the foetus might be deformed, at which stage the legal time limit to request an abortion had passed, depriving her of the right to an informed decision on whether or not to carry the foetus to term. Her third child was thus born with abnormal chromosomes (Turner syndrome); raising and educating a severely ill child had been extremely damaging to herself and her older children. Her husband had also abandoned the family following the birth of their disabled daughter.

The judgment showcases the interplay between access to health-related information, bodily self-determination and parenthood rights. First, the Court reiterated that ‘the notion of private live applies to decisions both to have or not to have a child or to become parents’.Footnote ³⁹ More specifically:

As a result, the prohibition on termination of pregnancies for reasons of health and/or well-being interferes with the expectant mothers’ right to respect for their private lives.Footnote ⁴¹ The Court limited the dispute before it to the issue of access to prenatal diagnostic, without having to decide on access to abortion in general; in fact, abortion was allowed by Polish law in case of genetic illness in the foetus, but the diagnosis was a prerequisite in order to qualify for a legal abortion: ‘It was not access to abortion as such which was primarily in issue, but essentially timely access to a medical diagnostic service that would, in turn, make it possible to determine whether the conditions for lawful abortion obtained in the applicant’s situation or not.’Footnote ⁴² Although this is not an abortion rights case, the judgment recognises the link between diagnosis (i.e. access to health-related information) and abortion: the denial of prenatal testing breaches Convention rights because it divests the woman of her ability to make an informed reproductive choice:

The Court had already established in Tysiąc v. Poland that ‘the State is under a positive obligation to create a procedural framework enabling a pregnant woman to exercise her right of access to lawful abortion’.Footnote ⁴⁴ Applying that principle to the narrower issue at hand, the ruling focused on the affirmative measures required to ensure the effective enjoyment of a domestic right, rather than establishing a free-standing Convention right to abortion on grounds of foetal abnormality: ‘if the domestic law allows for abortion in cases of foetal malformation, there must be an adequate legal and procedural framework to guarantee that relevant, full and reliable information on the foetus’ health is available to pregnant women’.Footnote ⁴⁵ The inability to obtain a medical diagnosis of the foetus’s condition within the time limit for lawful abortion deprived the applicant of an option afforded by the law.Footnote ⁴⁶

At the same time, the Court outlined the broader interests in prenatal testing, dismissing the Polish government’s contention that access to prenatal genetic tests was tantamount to access to abortion; it noted that women sought access to such tests for various reasons: dispelling suspicions over foetal malformation, embarking on prenatal treatment where possible, giving the family time to prepare (including through counselling) for the arrival of a baby affected with an ailment; therefore, genetic tests could not be equated with encouraging pregnant women to seek abortion.Footnote ⁴⁷

The judgment remains heavily dependent on the domestic context at play. Since Polish law permitted abortion in cases of foetal malformation and entitled pregnant women to obtain information on the health of the foetus through genetic testing, the decision hinged on the flawed enforcement of the law and the ‘striking discordance between the theoretical right to a lawful abortion in Poland … and the reality of its practical implementation’.Footnote ⁴⁸ The Court lamented the lack of effective mechanisms enabling an expectant mother to gain access to diagnostic services and to make an informed decision in light of the results.Footnote ⁴⁹ It thus reached the conclusion that Polish authorities ‘failed to comply with their positive obligations to secure to the applicant effective respect for her private life’.Footnote ⁵⁰

One important aspect of the implementation of the law is the positive obligation arising in relation to third-party action: ‘States are obliged to organise the health services system in such a way as to ensure that an effective exercise of the freedom of conscience of health professionals in the professional context does not prevent patients from obtaining access to services to which they are entitled under the applicable legislation.’Footnote ⁵¹ This finding aligns with ‘General Comment No. 22’ (2016) of the Committee on Economic, Social and Cultural Rights, which highlighted the duty of States to ensure that the expectant woman’s rights are not hindered by the ideological objections to abortion held by others, including by medical professionals.Footnote ⁵²

Admittedly, the R.R. v. Poland judgment does not go as far as establishing a Convention right to genetic testing and therapeutic abortion in case of foetal abnormality. A finding for the applicant did not require a judicial determination of this magnitude, unnecessarily straying into the controversial territory of abortion rights; this is an area of law where the Court has been notoriously deferential to municipal regulation, given the sensitive nature of the issues at stake.Footnote ⁵³ However, R.R. v. Poland importantly stressed States’ obligation to organise their health services so as to ensure that the exercise of freedom of conscience by health professionals did not prevent patients from obtaining access to services to which they were legally entitled. In addition, the A, B and C v. Ireland decision had already acknowledged that, by permitting abortion on grounds wider than risks to the mother’s life, ‘the majority of Contracting States have established a maternal-fetal legal balance in which a woman’s interests in health and wellbeing can outweigh the fetus’s in life’.Footnote ⁵⁴ This arguably laid the foundations for the future judicial recognition of a right to terminate a pregnancy at least on the grounds of foetal abnormality, given its impact on the mother’s psychological and emotional well-being. Moreover, in R.R. v. Poland, the Court cited the Council of Europe’s ‘Recommendation No. R (90) 13 on Prenatal Genetic Screening, Prenatal Genetic Diagnosis and Associated Genetic Counselling’,Footnote ⁵⁵ which promotes the adoption of legislation on genetic screening.Footnote ⁵⁶ The decision could be seen as reinforcing a soft law recommendation by emphasising its human rights foundations.

Uncertainties remain, however, as to whether the scarcity of resources or training is an acceptable justification for the failure to secure access to genetic testing. In R.R. v. Poland, the Court appeared to make a theoretical concession per a contrario when it stressed that no technical obstacles existed in the case before it: ‘it has not been argued, let alone shown, that at the material time genetic testing as such was unavailable for lack of equipment, medical expertise or funding’.Footnote ⁵⁷ The Court recalled that ‘the Convention does not guarantee as such a right to free medical care or to specific medical services’, and it distinguished the case before it from previous rulings on positive obligations under Article 8 to afford access to certain healthcare services available.Footnote ⁵⁸ Its emphasis was on the fact that no objective reasons had been adduced to justify the failure to carry out genetic tests without delay once suspicions as to the foetus’s condition had arisen; instead, the delays had been caused by the doctors’ reluctance to refer the patient for tests and also by ‘a certain organisational and administrative confusion in the health system’ in connection with costs and the provision of certain services.Footnote ⁵⁹ The difficulties experienced by the applicant were therefore imputable to both individual liability and systemic problems. Despite the Court’s understandable reluctance to impose costly obligations on States, it has been observed that ‘it costs less to provide screening, diagnosis and termination than the medical and social care, special education and support for some children born with serious abnormality’.Footnote ⁶⁰

It is worth noting that, for the Court, the facts in R.R. v. Poland also disclosed a violation of Article 3 (prohibition of inhuman and degrading treatment) insofar as the applicant had been left in a state of anxiety and treated with disdain by medical professionals hostile to abortion; the determination of her access to genetic tests after the first scan indicating possible foetus malformation had been affected by stalling, confusion and lack of adequate counselling and information:

The technical availability of diagnostic services and the applicant’s entitlement to those services under domestic law were found to be aggravating circumstances.Footnote ⁶² The Court concluded that the applicant was ‘shabbily treated by the doctors dealing with her case’ and ‘humiliated’,Footnote ⁶³ and that her suffering ‘reached the minimum threshold of severity under Article 3 of the Convention’.Footnote ⁶⁴ Interestingly, for the Court, the non-compliance with Article 3 stemmed not only from an omission, that is, the authorities’ failure to regulate conscientious objection so as to enforce the applicant’s rights against interferences by medical professionals based on their own moral preferences;Footnote ⁶⁵ it was also due to active conduct amounting to degrading treatment:

Notwithstanding the narrow scope of the judgment (existing – but improperly implemented – domestic rights to prenatal testing and therapeutic abortion), the R.R. v. Poland ruling firmly established that access to prenatal diagnosis, critical to dispelling uncertainties over the health of the foetus, is an integral part of reproductive rights. Denial or procrastination of access to testing not only breaches privacy rights but may also amount to degrading treatment. Significantly, the judgment confirms that access to prenatal diagnosis, capable of identifying genetic disorders in a foetus and allowing the exercise of autonomous procreative choices, is not a purely domestic right.

The ECtHR’s stance is strengthened by the jurisprudence developed under the ICCPR and the American Convention on Human Rights (ACHR). The UN Human Rights Committee (HRC) has found violations of the ICCPR in relation to the defective implementation of, and legal bans on, access to therapeutic abortion. In Llantoy Huamán v. Peru, the HRC criticised the restrictive interpretation by medical authorities of therapeutic abortion as inapplicable to a pregnancy involving an anencephalic foetus, insofar as it was not considered to endanger the woman’s life and health.Footnote ⁶⁷ In Mellet v. Ireland and Whelan v. Ireland, the HRC condemned the impossibility of legal abortion in circumstances where the congenital defects in the foetus were likely to result in its death in utero or shortly after birth (the grounds for termination being limited to cases of threat to the life of the woman).Footnote ⁶⁸ The HRC emphasised the mental anguish suffered by the victim – who was already highly vulnerable after learning that her wanted pregnancy was not viable – when faced with the legal ban on the abortion of a fatally ill foetus, with the stigma associated with the criminalisation of abortion, with the trauma and expense of travelling to another country while carrying a dying foetus, and with the obstacles to information about her medical options and lawful abortion services overseas (due to the criminalisation of speech promoting abortion); overall, these acts and omissions violated the prohibition against cruel, inhuman or degrading treatment (Article 7 ICCPR).Footnote ⁶⁹ The interference with the woman’s decision not to continue her non-viable pregnancy was found to constitute an arbitrary interference in her privacy, in violation of Article 17 ICCPR, in that such a balance between protection of the foetus and the rights of the woman could not be justified.Footnote ⁷⁰

A similar approach was adopted in the inter-American system. In Beatriz v. El Salvador, the Inter-American Commission on Human Rights (IACmHR) condemned the absolute ban on abortion, which had compelled the victim to carry to term an anencephalic foetus, incapable of surviving more than a few hours after birth, despite the high risk to the mother’s life and health.Footnote ⁷¹ For the IACmHR, the criminalisation of abortion was grounded in discriminatory stereotypes against women (based on women’s reproductive role) and generated institutional violence against them, breaching their rights to life, personal integrity, private life, equality before the law, judicial protection and health.Footnote ⁷²

As regards the impact of bans on disseminating abortion information on reproductive choice, Cook et al. have noted that Strasbourg case law supports the claim that ‘governments have positive duties to ensure access to information that is necessary for individuals to protect their health’.Footnote ⁷³ They cite Open Doors Counselling v. Ireland to the effect that an injunction against the provision of information on abortion services creates a risk to the health of women seeking abortion at a later stage in their pregnancy.Footnote ⁷⁴ The recent case law on therapeutic abortion in situations of foetal abnormality has developed the right of access to information that protects reproductive health, moving from information allowing the safe termination of pregnancies to the use of medical technology to avoid life-impairing conditions in the future progeny.

4.2.2 Procedural Rights: Remedies in the Case of Delayed Access and Misdiagnosis

A number of Strasbourg rulings have addressed the failure of medical professionals to conduct appropriate antenatal tests or to refer expecting women to antenatal testing where the law required them to do so (due to the mother’s age and the increased likelihood of genetic abnormality) as well as cases of erroneous diagnosis (omitting to identify serious genetic defects in the foetus). In either situation, the expecting mothers were deprived of the opportunity to make an informed decision on the continuance of the pregnancy, and this was acknowledged in domestic proceedings. The complaints before the ECtHR related either to the lack of rigour in the conduct of domestic claims in negligence or to legal bars on instituting proceedings for compensation.

In 2005, the Grand Chamber pronounced on the retrospective application of a new legislative bar on claims for compensation by parents whose children’s disabilities were undetected before birth due to the lack of appropriate medical tests. In Draon v. FranceFootnote ⁷⁵ and Maurice v. France,Footnote ⁷⁶ the applicants’ children were born with severe congenital disabilities, which, due to medical negligence, had not been discovered in the course of prenatal medical examinations; the applicants had brought proceedings against the hospitals concerned. A new French law, introduced while those proceedings were pending, precluded them from claiming compensation for life-long ‘special burdens’ resulting from the children’s disability. As a result, the level of compensation they were awarded was substantially lower.

In Strasbourg proceedings, the parties agreed that, based on the liability rules in force when the domestic claims were filed and the settled case law of administrative courts, the applicants had suffered prejudice directly caused by medical negligence and could expect to obtain compensation for damage, including the special burdens arising from their children’s disability.Footnote ⁷⁷ Consequently, the new bar amounted to an interference with the right to peaceful enjoyment of a ‘possession’Footnote ⁷⁸ within the meaning of Article 1 of Protocol No. 1 to the ECHR.Footnote ⁷⁹ The Court accepted that this interference was in accordance with the law and recognised that national authorities were in principle better placed to decide ‘what is in the public interest’.Footnote ⁸⁰ However, it recalled that ‘an interference with the peaceful enjoyment of possessions must strike a fair balance between the demands of the general interest of the community and the requirements of the protection of the individual’s fundamental rights’.Footnote ⁸¹

The assessment of proportionality hinged on the prior existence under domestic law of a right to a considerable sum of money payable as compensation for ‘wrongful birth’, hence the deprivation of an asset due to the repeal of an essential head of damage with retrospective effect, and without comparable financial support for parents under the revised welfare system.Footnote ⁸² Although the applicants were entitled to benefits under the new legislation, the amount was substantially lower than the asset lost (the amount to which previous liability rules entitled them) and inadequate to meet the costs associated with their children’s disability.Footnote ⁸³ Moreover, the compensation awarded to the applicants covered ‘non-pecuniary damage and disruption to the applicants’ lives, but not the special burdens arising from the child’s disability throughout his life’.Footnote ⁸⁴ The Grand Chamber held that the government’s justification, alleging ‘ethical considerations, equitable treatment and the proper organisation of the health service’, ‘could not … legitimise retrospective action whose result was to deprive the applicants, without sufficient compensation, of a substantial portion of the damages they had claimed, thus making them bear an individual and excessive burden’.Footnote ⁸⁵ The cost that the individual was required to bear was disproportionate in relation to the public interest aim pursued.Footnote ⁸⁶

Although the Court concluded that the retrospective application of the new law was in violation of Article 1 of Protocol No. 1, the finding applied only to proceedings which were pending when the law came into force.Footnote ⁸⁷ Moreover, despite this positive development under Protocol 1, the approach to the Article 8 claims in Draon and Maurice was disappointingly deferential and failed to establish a broader principle of compensation for wrongful birth, capable of recognising the devastating consequences of diagnostic errors on autonomous family planning and the family’s quality of life. The Court reiterated the subsidiary nature of the Convention systemFootnote ⁸⁸ and interpreted the Article 8 complaint to regard ‘inaction by the State, which had not set up an effective system to provide compensation for special burdens arising from their child’s disability’.Footnote ⁸⁹ Framed in these terms, the issue was for the Court whether the measures in relation to disabled persons ‘have anything to do with the applicants’ right to lead a normal family life’.Footnote ⁹⁰ The Court deemed it unnecessary to reach a definitive answer on the applicability of Article 8 to the claim, insofar as, even if it did apply, the situation complained of had not breached that provision.Footnote ⁹¹ More specifically, the new law was the product of ‘comprehensive debate in Parliament’, following consultations with the relevant stakeholdersFootnote ⁹² (essentially the Animal Defenders International v. The United Kingdom position,Footnote ⁹³ albeit not referenced), and it was within the wide margin of appreciation of the national legislature to decide whether it was best for the costs of caring for disabled children to be borne by social solidarity rather than through actions brought under the ordinary law of liability.Footnote ⁹⁴

The Court’s Article 8 analysis revolves entirely around the issue of State support for disabled children, rather than addressing the obligation to protect against third-party negligence.Footnote ⁹⁵ This is an unfortunate distortion of the claim. The Article 8 complaint arguably concerned the positive duty to prevent private-party negligence affecting a person’s private and family life, through inter alia deterring financial sanctions. There is ample case law to establish obligations under Article 8 to prevent wrongful acts of third parties through appropriate legislation;Footnote ⁹⁶ indeed, civil and criminal liability for negligence resulting in wrongful birth can act as an important behaviour modifier. In a Separate Opinion, Judge Bonnello also noted the discriminatory immunity given by the impugned law to medical practitioners working in one particular branch of medicine, in derogation from the internationally accepted norm of liability for harm caused to others through malice or negligence.Footnote ⁹⁷ Although the judge cites this as an additional factor in assessing the proportionality of the interference with Article 1 of Protocol 1, it could be argued that relieving doctors from the consequences of their mistakes also debilitates the protection of Article 8 rights. The very core of that right is affected by a supervening law barring parents from obtaining compensation for damage from those negligently causing them to raise a disabled child, commensurate to the special burdens arising therefrom throughout their lives (not just during the child’s minority).Footnote ⁹⁸

While the Draon and Maurice rulings regrettably sidestepped the discussion of prospective parents’ entitlement to protection against negligence affecting procreative rights, this returned prominently before the ECtHR in A.K. v. Latvia.Footnote ⁹⁹ This case required it to address State obligations in relation to the negligent antenatal care given to women whose pregnancy presents the risk of congenital abnormality. The applicant, who was expecting her third child at the age of forty, alleged that her doctor did not refer her for an antenatal screening test, despite the fact that domestic law provided that all pregnant women over the age of thirty-five undertake that test, given the increased medical risks. The applicant subsequently gave birth to a daughter suffering from Down’s syndrome and was denied any compensation in civil proceedings against the doctor for medical negligence. She argued that she had been denied adequate medical care, in that the antenatal screening test provided for by law would have indicated the risk of the foetus having a genetic disorder, allowing her to choose whether or not to continue the pregnancy.

The judgment treats the failure to refer a patient for antenatal screening tests and its inadequate judicial scrutiny in civil proceedings as a violation of the procedural limb of Article 8. This approach may have been inspired by the fact that, as the Court noted at the outset, the applicant did not claim that the domestic framework was inadequate to ensure the appropriate level of care to pregnant women; instead, she contended that the doctor had not observed the regulations and that domestic courts had failed to properly examine her claim for compensation.Footnote ¹⁰⁰ The Court is yet to adjudicate a case where the complaint regards the lack of provision in domestic law for antenatal testing capable of detecting foetal abnormality. The A.K. v. Latvia dispute merely regarded the failure to enforce the law. Since legislation was in place to protect Article 8 rights, but its implementation was deficient, and hence the protection of the rights was ineffective, a substantive violation of Article 8 might have also been warranted.Footnote ¹⁰¹ It is worth noting, however, that the majority of the Court chose to treat the case as a procedural violation of Article 8, as opposed to a violation of Article 6 (which was the preference expressed in a concurring opinion).Footnote ¹⁰² This choice is significant, because it recognises that the matter affected not only fair trial rights but also private and family life rights.

Indeed, this trend seems to take hold. Ulusoy and Others v. Turkey concerned the investigation of responsibility for severe disabilities allegedly caused to a child by inadequate prenatal and delivery care; although the applicants invoked Articles 3 and 6 ECHR, the Court, who remains the master of the characterisation of the case, invited the parties to make submissions as to whether there had been a violation of Article 8.Footnote ¹⁰³ The finding of a violation of Article 8 in its procedural aspect consolidated – as part of the notion of respect for private life – the right to an effective investigation into allegations of gross fault in the provision of prenatal and delivery care.Footnote ¹⁰⁴

The A.K. v. Latvia judgment examined the conduct of proceedings against the doctor for negligence, to which, in the upper courts, the applicant had added the failings of the first instance court. The ECtHR found that ‘the domestic courts’ approach to the applicant’s claim disclose[d] the appearance of arbitrariness’, given ‘the cumulative effect of the failings’ in the conduct of proceedings, which meant that her claim that she had not received medical care as required by law for the protection of her interests had not been properly examined.Footnote ¹⁰⁵ Albeit recognising the significant margin of appreciation left to States in this sensitive area of law, the Court noted several shortcomings in the domestic courts’ assessment of the case, and in particular ‘important factual discrepancies’:Footnote ¹⁰⁶ the judicial finding that the applicant was not in a risk category solely on account of her age, despite a domestic ordinance to the contrary; the lack of investigation of discrepancies in the medical records as to the date of commencement of the applicant’s pregnancy and the time of her referral for a test; the disappearance of the applicant’s medical records for several months during the criminal investigation, despite the legal obligation for doctors to keep and make records available promptly; the failure to consider the lack of reaction from the doctor, during subsequent appointments, to the applicant’s absence from the alleged genetic test appointment; the refusal of one of the courts to take evidence from the applicant, allegedly unnecessary, although it had taken evidence from the doctor and there were factual inconsistencies; finally, the failure to examine the applicant’s right to compensation in respect of non-pecuniary damage.Footnote ¹⁰⁷ In light of these circumstances, the Court ascertained ‘a violation of Article 8 in its procedural aspect’.Footnote ¹⁰⁸ This decision must be welcomed. Although a dissenting opinion saw the Court acting ‘as a fourth-instance national court’,Footnote ¹⁰⁹ if the Court refrains from taking a stance in the presence of serious procedural shortcomings, depriving a victim of redress, its review would be a token exercise.

Admittedly, all the aforementioned judgments condemned the lack of effective and timely access to accurate antenatal testing for disabilities, and an adequate remedy in case of interference with that right, in circumstances where domestic law already provided for such services. A total ban on access to prenatal diagnosis and therapeutic abortion has not been examined by the ECtHR. A large number of cases brought against Poland following a recent change in the law which restricts access to legal abortion on grounds of foetal defects are currently awaiting deliberation.Footnote ¹¹⁰ However, the following sections argue that a ban would be difficult to justify, on the basis of either the ‘rights of others’ or under the ‘public morals’ exception.

4.2.3 The ‘Expressivist’ Objection: ‘Rights of Others’ and Proportionality

In principle, the ‘rights of others’ justification for restrictions might be relevant to the debate on prenatal diagnosis and therapeutic abortion if one interprets permissive laws as tantamount to passing judgment on the worthiness of existing people with disabilities. Some view abortion on the grounds of the foetus’s medical condition as ‘sending a problematic message to other people (mainly the affected family members) with the same disability’.Footnote ¹¹¹ Moral opposition to the availability of prenatal testing and selective abortion has also invoked ‘the belief that a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery’.Footnote ¹¹²

The expressivist objection to prenatal diagnosis and therapeutic abortion conflates the value of individuals and the value of impairments; the view that impairments are undesirable does not equate with the view that individuals living with impairments (congenial or acquired) are undesirable. As John Gilliott pointed out, parents who choose against disability make a ‘relative judgment’ that ‘life without the condition is better than life with it’, which is entirely different from saying that life with a genetic disorder is not worth living.Footnote ¹¹³ In a democratic, pluralist society, the law should not prohibit parents from holding and acting upon such belief. Moreover, Ruth Deech and Anna Smajdor have suggested that many parents may prefer not to have a child with a condition – for example, Down’s syndrome – not only because of the impact on their own lives but also because the children may suffer from harassment, discrimination, the inability to lead an independent life and hence vulnerability to potential abuse.Footnote ¹¹⁴ The concern not to bring into the world children whose well-being would be at risk is not indicative of disparaging attitudes towards disabled people. While society should, of course, nurture all individuals once they are born, parents should not be compelled to accept the natural lottery with fatalistic resignation when they have the ability to influence it in the early stages of conception or gestation. The decision as to what disabilities make the future child’s life and the parenting experience insufficiently rewarding is a personal – not a societal – one; in some cases (e.g. severe mental development arrest), the condition is such that no bonding can exist between the child and the parent, or the child exhibits aggressive behaviour. For instance, a child afflicted by the Lesch–Nyhan syndrome ‘will suffer from limb spasms, and self-mutilation and aggressive behaviour, and will usually die in his teens’.Footnote ¹¹⁵ Jackson also challenged the assumption that the abortion of foetuses with disability sends a message that disabled people should not have been born, insofar as predicated on ‘some belief in the moral equivalence of a fetus and a person’.Footnote ¹¹⁶

By seeking to limit one person’s autonomy to avoid sending an unpleasant message to others, the expressivist objection to genetic selection also fails to recognise modern society’s neutral acceptance of individual choice within the boundaries of the medically feasible. The availability of weight loss programmes and liposuction procedures does not send the message that overweight members of society are not (or are less) valued. Admittedly, obesity is not desirable on account of medical risks, but even in areas where no medical benefits justify choice, and individuals pursue mere preferences that they perceive as enhancing their well-being, the law does not preclude it, and in doing so, it does not convey any particular message. Surely the lawfulness of nose reduction and breast augmentation surgery does not suggest that society consider individuals without those features to be inferior. If one were to accommodate expressivist theories, people with the opposite traits might be offended by the fact that surgical procedures are offered to ‘correct’ them, implicitly conveying the message that their traits are judged as inaesthetic and undesirable, or that individuals born with such traits are less appreciated by society. Taken to its ultimate consequences, the expressivist objection would justify laws preventing parents from providing their child with prosthetic legs to improve the child’s mobility and independence, lest this could be perceived as an offensive suggestion that individuals missing a limb are less valued. Decisions pertaining to private and family life are personal and self-referential; they are not a reflection on others. The fact that some people could misread the permissive approach of the law is not sufficient to justify restrictions on parental choice with far-reaching consequences.

Interestingly, it was noted that ‘disability rights activists have challenged the use of language such as “abnormalities”, “defects”, and “risks” [in the way prenatal testing is presented] because they are normative and have built-in connotations’, indirectly influencing pregnant women’s decisions.Footnote ¹¹⁷ However, respect for reproductive health and procreative autonomy is not ensured if, out of deference to euphemism-prone political correctness, objective medical data are not accurately represented to prospective parents, allowing them to make informed decisions. Disability can entail deprivation of certain opportunities, and often hardship, both for children and their parents. This is recognised in international instruments intended to protect the rights of people with disabilities and not to disparage them; such is, for instance, Article 1 of the UN Convention on the Rights of People with Disabilities: ‘Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’Footnote ¹¹⁸

More importantly perhaps, the rights of others are not sufficiently engaged by aspiring parents’ ability to exercise choice. Some individuals’ ability to choose for themselves and their future children should not be limited by fears of perceptions by others who are not directly affected, nor subordinated to the dominant views of the majority in society. To compel someone to forego the medical care capable of preventing life-long trauma simply for the sake of sparing the feelings of others who might be offended by that choice is a disproportionate infringement of fundamental rights. The lack of choice has dramatic, life-altering consequences for those immediately impacted by a legal ban on selective abortion. Whenever a conflict of interests arises, human rights analysis resolves it through a balance of the harms involved in (not) adopting a measure. The symbolic harm for existing disabled people, if selection is permitted, is outweighed by the harm for prospective parents if the law prohibits the choice of avoiding serious genetic illnesses or disabilities (i.e. the harm ensuing from physical, psychological, financial and opportunity costs). The unpleasantness of the idea of selection against genetic illness, even if magnified as ‘harm’, should be mitigated through civic education. Wilkinson has highlighted the distinction between ‘the intended message and the message that is received (or perceived) by people with disabilities’, stressing the importance of minimising the discrepancy between the two so as to allay concerns.Footnote ¹¹⁹ Glover has helpfully suggested that, to reduce the impact of genetic screening on the disabled, a clear signal needs to be sent about its purpose: ‘To think that a particular disability makes someone’s life less good is not one of the ugly attitudes [towards disability]. … The existence of doctors, hospitals, and pharmaceuticals is not an insult to the sick, just a sign of the platitude that illness impairs human flourishing.’Footnote ¹²⁰ Jackson draws a useful parallel with the decision of a middle-aged woman not to continue a pregnancy: ‘if a 48 year old woman decides to terminate an unexpected pregnancy, she is not presumed to be sending a message to all children with older mothers that they should not have been born. Rather she has taken a decision about the course of her life that only she is equipped to make.’Footnote ¹²¹

The alleged practical impact of prenatal tests on the disabled, such as the reduction of public expenditure on accessibility adjustments (e.g. ramps) or on medical research, is speculative and insufficient to qualify as harm (certainly not as greater harm when compared to the impact that a ban would have on parents). Jackson has pointed out that only very few types of disability can be avoided through genetic testing and therefore the impact on society at large is insignificant:

The concrete benefits for disabled people of prohibiting selective abortion are not demonstrated and certainly too remote to legitimise such an extreme interference with the expectant woman’s rights to bodily self-determination and reproductive choice. Jackson has convincingly argued against the tyranny of intrusive restrictions of patient autonomy aimed at influencing public perceptions: ‘Forcing a woman to continue an unwanted pregnancy to term in order to achieve a shift in social attitudes or in scientific priorities would represent a marked exception to the current trend in medical law of treating patient autonomy as the overriding consideration.’Footnote ¹²³ Unless the adverse impact of a person’s right to self-determination on others is of a certain magnitude, restrictions based on remote and indirect effects are disproportionate.

4.2.4 ‘Public Morals’ and Self-Determination

For the same considerations of proportionality seen in relation to the ‘rights of others’, ‘morals’ is a feeble justification for barring abortion on foetal abnormality grounds. Strasbourg case law has accepted that decisions in the sphere of medical treatment or personal lifestyle that others find immoral cannot be restricted merely on the basis of the repugnance or condemnation of the majority. For instance, the majority’s belief in the absolute sanctity of life does not prevail over a patient’s right to refuse life-saving treatment. Indeed, autonomy extends to self-harming decisions.Footnote ¹²⁴ As the ECtHR clarified in Pretty v. The United Kingdom: ‘the ability to conduct one’s life in a manner of one’s own choosing may also include the opportunity to pursue activities perceived to be of a physically or morally harmful or dangerous nature for the individual concerned’.Footnote ¹²⁵ To limit a woman’s physical self-determination based on others’ philosophical views on the moral status of the foetus is equally unacceptable. Moreover, the treatment of the woman as a mere vehicle for the foetus and the subordination of her bodily self-determination rights to the interests of the foetus would deprive her of agency and raise questions of human dignity. Cook et al. have highlighted the increasing international trend against the denial of abortion, based on its demeaning and discriminatory impact on women’s rights:

Many authors view the concerns over women’s rights as important not only when abortion is sought on health grounds. Nicolette Priaulx has argued that permitting abortion only on grounds of serious foetus abnormality is not satisfactory, because the ‘additional emotional, financial and caring burden if she continues to care for the child’ is not limited to cases of disability.Footnote ¹²⁷ Moreover, the legal option of genetic testing does not lend itself easily to abuse. Jackson has pointed out that it is unlikely that prenatal testing can be offered as a routine and generalised procedure, firstly, because the procedure to obtain foetal tissue sample is invasive and involves a risk of miscarriage and, secondly, because it is impossible to test for all genetic diseases; in fact, the clinical team must know which condition they aim to detect (or screen for the most common conditions, such as cystic fibrosis).Footnote ¹²⁸

It could be further argued that abortion restrictions are inconsistent with the priority given to the expectant woman’ rights over foetal interests under the law on consent to medical treatment; she cannot be administered life-preserving medical treatment against her wishes even if her death also ends the life of the foetus. Nor can public authorities restrict the woman’s lifestyle choices on the basis that they harm the foetus.Footnote ¹²⁹ The decision not to carry the pregnancy to term may affect the sensitivities of those attaching moral value to any human tissue, but their unease, even if elevated to the status of ‘public morals’, is too remotely connected to justify the grave interference with the woman’s self-determination and procreative rights.

4.3.1 Embryo Selection in Human Rights Litigation

Reportedly, each year nearly 8 million children worldwide are born with serious illnesses having a genetic cause.Footnote ¹³⁰ These statistics are not unavoidable; procreative liberty arguably encompasses an individual’s right to pre-empt, rather than treat, genetic illness in the offspring through recourse to PGD and the selection of healthy embryos.Footnote ¹³¹ There is, in fact, little basis for distinguishing, in moral terms, between medical therapy given to a child after birth (to cure, or manage the symptoms of, an illness) and antenatal medical intervention, allowing the child to be shielded against foreseeable diseases before it is born. In both cases, treatment is provided because the disease or disability reduces the child’s quality of life and opportunities for development; the timing of such action, at the conception stage or after birth, should not be overmagnified. In some cases, PGD may be crucial for a couple’s ability to procreate altogether; as Robertson has indicated, in the absence of PGD, many at-risk couples might forego reproduction rather than taking the chance of having a seriously ill child or terminating an affected pregnancy.Footnote ¹³² In such cases, the refusal of access to PGD and IVF raises significant concerns as to the effective protection of reproductive rights.

Although Strasbourg case law does not seek to harmonise medically assisted procreation laws,Footnote ¹³³ the Court has shown readiness to act as an enforcer of domestic reproductive rights, especially in the presence of inconsistencies in domestic legislation. In Costa and Pavan v. Italy, the Court held that the prohibition of access to IVF and PGD for couples wishing to avoid the transmission of genetic diseases to their children, in circumstances where prenatal diagnosis and abortion were permitted, was a disproportionate interference with Article 8 rights.Footnote ¹³⁴ The applicants – healthy carriers of cystic fibrosis – had one child to whom the disease had been transmitted and had terminated a subsequent pregnancy when the foetus was diagnosed with the disease. To avoid replicating this situation, they sought access to IVF and PGD allowing for the selection of healthy embryos. Under Italian law, IVF treatment and PGD were available only to infertile couples and to couples in which the male partner suffered from a sexually transmissible viral disease (such as HIV or hepatitis B and C);Footnote ¹³⁵ the selection of embryos for eugenic purposes was, conversely, prohibited. The applicants invoked their Article 8 rights and complained that the law limited their options to starting a pregnancy by natural means and terminating it if the foetus tested positive for cystic fibrosis.

An essential contribution of the Costa and Pavan unanimous judgment is the Court’s finding that the desire to have a healthy child is protected by Article 8:

The ECtHR agreed that the denial of access to reproductive technologies, in circumstances where these were available to other categories, amounted to an interference with the applicants’ right to respect for their private and family life.Footnote ¹³⁷ The applicants did not dispute that the restriction pursued the protection of morals and of the rights of others,Footnote ¹³⁸ and the Court accepted this without further analysis, although the specific aims listed are unconvincing: ‘the concern to protect the health of “the child” and the woman, the dignity and freedom of conscience of the medical professions and the interest in precluding a risk of eugenic selection’.Footnote ¹³⁹ Conversely, the measure failed the ‘necessary in a democratic society’ test, in that it did not protect the interests invoked by the respondent government as legitimate aims.

Firstly, Italian law allowed the applicants to terminate a pregnancy on medical grounds if the foetus was found to be affected by the disease.Footnote ¹⁴⁰ The Court questioned the law’s adequacy to protect the health of the mother, which was difficult to reconcile with the possibility of an abortion instead of PGD.Footnote ¹⁴¹ The Court pointed out ‘the anxiety experienced by the first applicant, whose only hope of having another child, since she is unable to have recourse to PGD, carries the concomitant risk that the child will be born with the disease or the suffering inherent in the painful decision to undergo, as the case may be, an abortion on medical grounds’.Footnote ¹⁴² A law preventing healthy carriers of genetic diseases to use IVF and embryo screening services, while allowing abortion if the foetus was affected by the same diseases, was deemed intrinsically inconsistent; this inconsistency compromised the proportionality of the restriction and violated the prospective parents’ Article 8 rights.Footnote ¹⁴³

Secondly, the Court acknowledged the different moral claim of the foetus when compared to the embryo, given the former’s more advanced stage of development:

The Court also questioned the justification based on eugenic selection and doctors’ freedom of conscience and dignity: ‘the Government have failed to explain how the risk of eugenic selection and affecting the dignity and freedom of conscience of the medical professions would be averted in the event of an abortion being carried out on medical grounds’.Footnote ¹⁴⁵ The finding that therapeutic abortion and PGD are equally eugenic in nature, and hence banning one but not the other was arbitrary, was sufficient for the case at hand. One may query, however, why selection against catastrophic illness is problematic and its avoidance is a legitimate aim. In the case of procreative rights, the boundary between medical needs and preferential (eugenic) selection is not always clear-cut. Stefano Biondi has highlighted the illogical use of medically assisted reproduction in Italian law ‘to treat infertility, but not to prevent the greater health impairments stemming from the birth of a disabled child, by [sic] the psycho-physical consequences of pregnancy termination or by [sic] the distress of having to make a tragic choice between these two options’.Footnote ¹⁴⁶ There is no discussion in the Costa and Pavan judgment of the concern to avoid eugenic selection as opposed to eugenic abuse. For the Court’s purposes, it was sufficient to note that abortion had the same result as embryo screening, except at greater costs to the parents, and hence the impugned measure was excessively intrusive and disproportionate.

As with the case law on prenatal diagnosis, the finding of a violation hinged primarily – albeit not exclusively – upon existing laws in the respondent State rather than upon autonomous ECHR rights, in particular the availability of abortion on grounds of diagnosed genetic disease. Although the judgment recognises that Article 8 protects the desire for a healthy child and the denial of embryo selection constitutes an interference with this right, what delegitimised the ban on PGD was the irrationality of an overall bioethical scheme requiring a couple to wait and abort the foetus on grounds of severe illness, but not allowing them to select healthy embryos:

The decision was also influenced, however, by the results of a comparative survey of thirty-two European States, which indicated that embryo screening on medical grounds was either permitted or not regulated in most States, whereas only an exiguous minority prohibited it.Footnote ¹⁴⁸ In addition, in its review of the relevant international and comparative legal framework, the Court cited Article 12 of the Oviedo Convention on Human Rights and Biomedicine,Footnote ¹⁴⁹ which allows PGD for the purposes of detecting genetic susceptibility to a disease, although it noted that Italy had not ratified this treaty.Footnote ¹⁵⁰ This may suggest an incipient ECHR right to have recourse to PGD. Indeed, the Court has previously relied on international treaties, not always widely ratified ones, to establish new ECHR rights, regardless of whether the respondent was a signatory.Footnote ¹⁵¹ While the Court noted that the vast majority of ECHR States permit genetic selection (via prenatal and pre-implantation genetic diagnosis) aimed at avoiding a serious disease or disability,Footnote ¹⁵² it did not need to base the judgment solely on European consensus, given the less controversial ground of domestic incongruity. This does not invalidate the argument that Article 8 rights have evolved to encompass prospective parents’ right to have recourse to the technologies available to safeguard their reproductive health, which includes, in line with the WHO definition, access to healthcare services providing couples with the best chance of having healthy infants.Footnote ¹⁵³

The Court did not embark upon the more ambitious task of establishing a ‘right to a healthy child’; indeed, it dismissed the Italian government’s contention that this was the right the applicant couple sought to assert and limited the claim before it to the right to detect and prevent a specific and particularly serious disease in the offspring, rather than all medical conditions.Footnote ¹⁵⁴ One might have preferred a broader condemnation of laws denying parents access to pre-emptive solutions against the transmission of serious hereditary diseases, which is in the interests neither of the parents nor of the resulting child (or indeed society as a whole, given the burdens associated with social solidarity and disability benefits, at the expense of provision for other rights such as education, fair trial or personal security). However, considering the wide margin of appreciation enjoyed by States in bioethical matters, a well-supported verdict upholding a narrow right was arguably more politic than a comprehensive finding of a right to a healthy child open to contestation. The Court, as an international tribunal, may understandably avoid acting as an intrepid vehicle for the assertion of a right to eugenic selection. Establishing the more limited right to choose PGD over therapeutic abortion advanced the human rights dimension of bioethical politics without calling into question the legitimacy of the judgment.

Significantly, the Court did not place domestic policies on access to PGD beyond the reach of international human rights supervision: ‘While acknowledging that the question of access to PGD raises sensitivie [sic] moral and ethical questions, the Court notes that the solutions reached by the legislature are not beyond the scrutiny of the Court.’Footnote ¹⁵⁵ To the extent that more European States offer IVF services with embryo pre-implantation screening, the scope of enforceable procreative rights is likely to widen, while the margin of appreciation reserved to States will continue to wane.

This emerging jurisprudence also suggests that, in future, Article 8 may expand to include access to more recent reproductive technologies, such as mitochondrial replacement techniques (MRTs), aimed at avoiding maternally inherited mitochondrial disease.Footnote ¹⁵⁶ The novel challenge posed by MRTs from a human rights perspective is that, in addition to preventing genetic disease, they involve partial reliance on ovum donation (so as to allow the replacement of the affected mitochondria with healthy mitochondria) and hence what could be seen as split biological motherhood, although the third-party material used is a very small percentage of the genetic heritage of the child. In the UK, legal by virtue of the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015,Footnote ¹⁵⁷ MRTs were initially met with some resistance. The most troublesome objection in the public consultation leading up to the legalisation of this technique was that women in this situation have other options, such as adopting or resorting to IVF with donated ovum.Footnote ¹⁵⁸ This, as Scott has rightly noted, amounts to the ‘downgrading of the interest which generates the need … in having not only a child free from serious genetic disease but also to whom the woman, the future mother, is genetically related’.Footnote ¹⁵⁹ As discussed in Chapter 2, the two alternatives to MRTs contemplated in the consultation misunderstand the fundamental right to a genetically related child and are wholly unsatisfactory.

The Strasbourg Court is yet to pronounce on any rights to resort to MRTs, and there is a certain danger that the centrality of the consensus doctrine in the analysis of reproductive autonomy cases will rein in the development of European human rights in this new and controversial area. As Scott has suggested, infertility issues and risks of genetic disease in the offspring only affect a minority, hence ‘the likely influence of hostile preference in relation to the lawfulness of reproductive interventions and technologies’.Footnote ¹⁶⁰ From this perspective, human rights challenges to the prohibition of new reproductive techniques present the same difficulty of other unpopular minority causes in Strasbourg litigation, such as assisted dying claims. The moral unease of unsympathetic majorities in the Council of Europe States might lead the Court to the deferral to domestic regulation.

4.3.2 ‘Morals’ and Individual Eugenic Pursuits

The legitimacy of policies precluding eugenic selection was not discussed at length in Costa and Pavan v. Italy insofar as not challenged by the applicants. Had the complaint regarded a free-standing ban on PGD, rather than the illogical combination of the ban with therapeutic abortion, a more extensive analysis of the legitimate aims and proportionality of the interference would have been necessary.

Notwithstanding the ‘normalisation of IVF’,Footnote ¹⁶¹ the use of PGD is still regarded with scepticism. Objections to human intervention at the early stages of procreation are variously inspired by aversion towards unnatural processes, ‘playing God’ concerns and eugenic scaremongering. As Glover has noted, eugenic selection tends to be accompanied by disapproval insofar as mistakenly linked with Nazi values, whereas the values guiding parents who wish to avoid genetic disability in their child are entirely different: they do not wish to cleanse society’s gene pool of disabled people, nor do they deem them inferior; their choice is based on compassion for the potential child.Footnote ¹⁶² Respect for individual choice, shaped by the prospective parents’ own experiences and expectations, bears no resemblance to a State-engineered programme on a societal scale. Somsen has suggested that ‘the eugenic instincts of private individuals’, ‘as a cumulative of individually expressed preferences, could systematically damage the interests of carriers of undesirable alleles’.Footnote ¹⁶³ It is unclear why the aggregate result of private utilisations of PGD, which may reduce disability in society by a small margin and not as a matter of State policy, should be seen as detrimental to existing carriers of diseases.

The idea that the State should have the monopoly on deciding which diseases entitle genetic selection and which are trivial eugenic pursuits is also questionable. As Gilbar wrote: ‘arriving at a societal agreement about the definition of “significant risk” or the “seriousness” of a disease or disability seems impossible, so leaving the decision to the doctors and prospective parents … may be the right policy, especially if the parents have already experienced having a child or a relative with a particular disease or disability’.Footnote ¹⁶⁴ What constitutes an unacceptably low quality of life is a subjective evaluation, and since parents bear the responsibility of raising the children, as well as being in charge of decision-making as regards children’s medical treatment, it needs to be deferred to them.

Objections to parents being able to predetermine the fate of their children and to avoid future children afflicted by genetic abnormality – the ‘playing God’ objection and its ‘consumerism’ variantFootnote ¹⁶⁵ – are oblivious to the fact that the law already allows parents to decide for minor patients what an acceptable quality of life is, and hence to make life-and-death decisions for their children, accommodating the desire to avoid the harm suffered by children as a result of catastrophic disabilities.Footnote ¹⁶⁶ The greater scepticism towards preventing disease in future children as opposed to consenting to active euthanasia or termination of life-sustaining treatment for existing children might be explained by the novelty of the ART field. On closer analysis, however, they both relate to the parents’ ability to decide for their (existing/future) children that a certain life is not worth living or that one possible life is preferable to another. If anything, allowing/causing a child to die on that basis is a more drastic decision than avoiding conception, by not selecting the embryo for implantation; the latter also seems preferable to avoiding the birth, by terminating a pregnancy, given the foetus’s further development.

Glover has also noted that genetic intervention against disability, aimed at promoting the child’s chances of flourishing, is not dissimilar to other medical treatments parents seek for their children: ‘We owe to our children other forms of medical treatment that they need, and gene therapy … is not different.’Footnote ¹⁶⁷ Indeed, he has suggested that there may be a parental duty to avoid life-impairing abnormalities: ‘Where an obstacle to flourishing can be eliminated in a way that is not unreasonably burdensome, its removal is something we owe to our children.’Footnote ¹⁶⁸ Since the desire to have a healthy child has been recognised as protected by the right to private and family life, State interferences cannot be justified by a blanket reference to eugenic risks or the undemonstrated assumption that all eugenic pursuits are to be seen as contrary to public policy.

4.3.3 Genetic Manipulation and the ‘Human Dignity’ Rhetoric

Another objection to selecting genes adduces that this is an unnatural process that affects human dignity. The rejection of all interventions seeking to modify human nature is problematic; probably no one would view living with an artificial limb or coronary bypass unnatural and, therefore, objectionable. Altering human nature to prolong and improve existence is already part of the contemporary human being’s identity. Glover makes the interesting point that, before the development of modern reproductive technology, being born inside of the genetic mother’s womb was seen as an essential characteristic of the human being, whereas ‘now we do not think that children of surrogate mothers are not human’.Footnote ¹⁶⁹ Buxton also notes that selecting the healthiest embryos ‘is mirroring … rather than interfering with Nature’, in that ‘many fertilised eggs never get as far as implanting into the womb’.Footnote ¹⁷⁰ The shallowness of the argument based on what is natural is also patent in Robertson’s observation that, ‘if any interference with nature is inappropriate, … any attempt to avoid reproduction or treat infertility would also be illegitimate’.Footnote ¹⁷¹ Contraception and circumventing infertility through ART are not natural processes, but their moral or legal permissibility is no longer in question. Respect for human rights is predicated on pluralism of life visions, and to impose on others deterministic fatalism in reproduction – requiring couples to resign to infertility and unwanted pregnancies – would be too narrow a view of the right (not) to reproduce.

From an ECHR perspective, ‘human dignity’ concerns could be accommodated under the ‘protection of morals’ justification for interferences with reproductive freedom. There are, however, notable difficulties with accepting that not only does ‘human dignity’ (an imprecise and subjective construct) constitute a legitimate aim, but curtailing human rights in its name is necessary and proportionate. As Deirdre Madden has explained, the concept of ‘human dignity’, albeit invoked in various international instruments (such as the Universal Declaration on Human Rights 1948 and the Universal Declaration on Bioethics and Human Rights 2005), is not defined, and ‘it serves as a placeholder for whatever it is about human beings that entitles them to basic human rights and freedoms’.Footnote ¹⁷² Human dignity arguments should be used with caution for both doctrinal credibility and because of its potentially deleterious practical consequences for certain individuals. The notion of human dignity should not be invoked as a smokescreen, to subvert its meaning from the foundation of human rights to blanket reason for inhibiting them.

Roger Brownsword has clarified that, for those adhering to the ‘dignitarian’ view, which posits that ‘human life should be protected and respected (from the point of conception onwards)’,Footnote ¹⁷³ ‘the use of embryos at any stage compromises human dignity’.Footnote ¹⁷⁴ However, without some gradation in the attribution of human dignity to human tissue capable of becoming a child, the rights of living persons risk being excessively curtailed in the name of future/potential human beings. That the embryo and the foetus have some moral status is unquestionable, whatever view one takes of human dignity, but the rights of sentient human beings, capable of feelings, occupy a superior position, not just on the technicality that they are the only genuine rights-bearers but also because they are the only ones susceptible of experiencing harm.

By the same token, if the notion of human dignity is applied indiscriminately to all forms of human tissue, as opposed to living persons, we arrive at paradoxical claims; for example, non-fertilised gametes have an entitlement to protection, and so discarding sperm is an affront to human dignity, since it does not allow the sperm to continue and materialise the potentiality for human life. Not all genetic material can have an equal claim to human dignity; otherwise contraception/family planning would have to be prohibited insofar as interfering with the potential of gametes to become a child. Madden has also drawn attention to the fact that ‘there is no certainty that the fertilized egg will ever become an embryo, or that the embryo will become a foetus’, and hence entities that have the potential to become human beings, subject to changes they may or may not undergo in order to develop the characteristics of personhood (i.e. intellect, will), should not be accorded the same rights as actual human beings.Footnote ¹⁷⁵ Querying the argument from potentiality, Jackson also notes that ‘occasionally, a fertilised egg will even develop into a type of tumour known as a hydatidiform mole rather than a human embryo’.Footnote ¹⁷⁶ However, Jackson supports the distinction between embryos and gametes: ‘the embryo contains a new genetic code, so it is clearly a significant step further on in the process of becoming a person than a spermatozoa or an unfertilised egg’.Footnote ¹⁷⁷ Moreover, Wicks has aptly noted that the ‘preservation of human dignity’ argument is incapable of justifying State regulation of reproduction, insofar as ‘assisted reproduction does not seek to use the human body for gain, nor put a price upon it, nor make it the subject of a commercial transaction (any more than does medical assistance in other forms of reproduction)’.Footnote ¹⁷⁸

The other notable difficulty with the concept of human dignity as an all-purpose justification for the restriction of procreative rights is that it allows the views of the majority, unaffected by infertility or transmissible congenital diseases, to restrict the rights of those few individuals who need PGD for the fulfilment of parenthood aspirations. The ECHR is not subordinate to utilitarian justice. Individual rights cannot be limited excessively in pursuit of some common good, even assuming that there is a shared understanding of human dignity that would qualify as common good rather than majority prejudice. Even if the prohibition of genetic screening could be seen as pursuing the legitimate aim of protecting public morals, that would not suffice to account for the impact on the lives of couples suffering from serious hereditary diseases. A measure affecting a small number of individuals disproportionately can still constitute a breach of human rights. Brownsword has noted ‘the tension between utilitarian promotion of the general good (where little or no attention is paid to the distribution of utility or disutility) and the constraints imposed if individual rights are to be respected’.Footnote ¹⁷⁹ Bars on genetic testing and IVF could be seen as indirectly discriminatory against the categories needing them and likely to express a demand for them.

Nor is the precautionary principle sufficient to explain away the restriction, given the stakes for some individuals. Somsen has pointed out that the debate over human genetics can borrow from the WTO and EU case law regarding genetically modified organisms, in particular the principle that a measure cannot be justified on the basis of a purely hypothetical approach to risk and the fact that science can never provide absolute certainty that there will never be any risks.Footnote ¹⁸⁰ He also points out that, from the perspective of a human rights review of the regulation of human genetics, ‘precaution leads to arbitrariness and provides governments with a blank cheque for limiting individual liberties’.Footnote ¹⁸¹

4.3.4 PGD and Disability Rights Concerns

Like prenatal diagnosis and therapeutic abortion, PGD has faced the expressivist objection. Glover has summarised the ‘expressivist objection’ to antenatal screening and pre-implantation diagnosis as follows: ‘What attitudes towards disabled people do these programmes express, and what message do they send to people who already live with these conditions? What does it do to your sense of being a valued member of society to realize that there are people who go to great lengths to avoid the birth of someone like you?’Footnote ¹⁸² In response, he argued: ‘there need be nothing wrong with the intention to have children with a better chance of flourishing as a result of not having a disability. … People should not be prevented from choosing children with more rather than less potential for flourishing.’Footnote ¹⁸³ The ‘message of the law’ basis for the denial of individual autonomy has also been raised in the context of assisted dying. In the literature and court proceedings, it was often adduced that the legalisation of assisted dying might send a message that life with certain critical impairments is not worth living; this argument confuses the State’s ethical neutrality in allowing individual beliefs and choices with a State policy promoting a specific view on critical illness.Footnote ¹⁸⁴ The unease with genetic choice for people living with disabilities is understandable, but the availability of genetic testing – or PGD and IVF – simply endorses autonomous choice. It does not compel or encourage prospective parents to avoid disability.

It has been argued, on the other hand, that the process of expanding the number of medical conditions accepted by the law as sufficiently serious to justify PGD ‘may lead society to show intolerance towards people with disabilities’.Footnote ¹⁸⁵ This is an undemonstrated concern, as is the alleged danger that, as a result of an increase in PGD, ‘people may become unwilling to accept children who are physically or mentally disabled’.Footnote ¹⁸⁶ On the contrary, Buxton has noted that the argument that PGD encourages discrimination against existing disabled or seriously ill individuals ‘is not borne out by studies of families who already have, and cherish, one child affected by a genetic disorder but wish to avoid the disease in future children’.Footnote ¹⁸⁷

Disability rights advocates have also attempted to accredit the idea that disability is not intrinsic but socially determined, in that it is created by the inadequate environment, with insufficient accommodations. According to Asch, ‘most of the problems associated with having a disability stem from discriminatory social arrangements that are changeable, just as much of what has in the past made the lives of women or gays difficult has been the set of social arrangements they have faced’.Footnote ¹⁸⁸ The analogy seems far-fetched and unhelpfully sugarcoating reality. Some conditions are so disabling that no adjustments can allow the individual to function well in society. The equal treatment and the recognition of the equal worth of people with disabilities should not translate into a hypocritical claim that disability is mere diversity and that being born with a disability is desirable.Footnote ¹⁸⁹ Scott has highlighted this simple reality: ‘No-one has an interest in acquiring mental or physical impairments.’Footnote ¹⁹⁰ A person is not reducible to their illness, and the value attached to them does not detract from the fact that illness is, on any account, undesirable. This is not to say that a life with a serious disability is not worth living; rather, assessed comparatively, a life free from impairments offers a better quality of life, and it is reasonable (and indeed natural) for parents to prefer it for their children. As Wilkinson has suggested: ‘all other things being equal, when faced with a choice between creating a child with a higher quality of life and one with a lower (but nonetheless positive) quality of life, we ought to choose the one with the higher quality of life’.Footnote ¹⁹¹ Wilkinson has emphasised the distinction between the assessment of the disability and of the person with disabilities: ‘There is nothing wrong with assigning a negative value to the functional impairment aspects of disability and this negative valuation of impairment does not entail and need not be accompanied by any negative valuation of the person with the impairment.’Footnote ¹⁹² He has also pointed out the absurd consequences of the expressivist argument: if we value disability as much as non-disability, this principle ‘entails that we should not seek to cure people when they acquire disabilities, and certainly should not use public resources to do so, because this would suggest that disability is less valuable than non-disability’.Footnote ¹⁹³

Moreover, the interests of existing individuals with disabilities cannot be taken so far as to deny the interest of future individuals in the promotion of their health at the conception stage. Scott has convincingly argued that any ‘offence’ caused to disabled people by PGD selection is justified in cases where otherwise a child has no chance at a reasonable quality of life, or his/her impairments have a significant adverse effect on the parents’ lives.Footnote ¹⁹⁴ When all the rights at stake are put into balance, the rights of the future child and of his/her parents to a higher quality of life and the avoidance of emotional distress greatly outweigh any abstract interest that the disabled may have in restrictions promoting a different social message; the latter are much more indirectly affected by the law’s approach to PGD. Since genetic screening techniques exist and greatly benefit future children and prospective parents, whereas the lack of choice has life-altering results, the burden is on the proponents of obstacles to PGD use to adduce compelling reasons, other than the discomfiture at speculative abstract implications of permissive laws. As with prenatal testing and therapeutic abortion – given the limited assistance of PGD against a small number of illnesses, as well as the non-congenital nature of many disabilities – the claim that PGD will reduce public investment in medical research and social adjustments for the disabled appears entirely unfounded.

4.4.1 Social Sex Selection through PGD and Prenatal Testing

While PGD is currently used for negative selection against serious impairments, other controversial uses include the choice of the baby’s sex and pre-implantation tissue typing for the purposes of creating a ‘saviour sibling’ for an existing sick child; there is also a vast speculative debate about its potential future use for the positive selection of certain preferential features.Footnote ¹⁹⁵ Although positive selection inspires less sympathy for the parents, Robertson has noted that, ‘because the embryo is so rudimentary in development, selection for less serious reasons should be less objectionable than screening of fetuses for those same reasons’.Footnote ¹⁹⁶

In some cases, sex selection may be motivated by a desire to avoid the transmission of a genetic disease inherited only by male or female offspring (e.g. certain forms of cancer but also late-onset illnesses). Since it targets illness, medical sex selection is governed by the same general considerations on PGD, examined in the previous sections. This section focuses on social sex selection, that is, selection for non-medical reasons, where the parents wish to achieve family balancing (already having numerous children of one sex), or make up for the loss of a deceased child of that gender, or simply exercise preference (especially when they need to choose from equally viable and healthy embryos the maximum number allowed for implantation). Gilbar has explained the usual roots of requests for sex selection: ‘Parents who want to choose the sex of their fourth or fifth child may have good reasons. … They may want to experience bringing up a child of a different sex. … They may believe … [it] will enrich their familial relationship and family life and will contribute to the emotional development of their existing children.’Footnote ¹⁹⁷

While there is no international case law on this issue, in principle, social sex selection falls within the parents’ autonomy rights. In relation to prenatal testing and abortion on the ground of the baby’s sex, Jackson has noted that ‘unease about sex-selective abortion does not justify derogating from the basic principle that a competent adult ought to be entitled to make her own decisions about what happens to her body’.Footnote ¹⁹⁸ She further argues that the termination of female foetuses in certain cultures (e.g. India and other South Asian countries), based on the devaluation of women, cannot be cured through bans on abortion: ‘Sex-selective abortion may be a particularly emotive symbol of entrenched sex inequality, but it makes little sense to tackle sex-selective abortion in isolation from the other social, economic and legal practices that devalue women’s lives.’Footnote ¹⁹⁹ Cook et al. have pointed out that many of the causes of devaluation of girl children (e.g. economic burdens associated with their marriage, lack of employment, etc.) are human rights violations in themselves, and ‘to claim that prohibition of sex-based abortion is sufficient to remedy these human rights violations is unrealistic’.Footnote ²⁰⁰ These authors also make the interesting point that societal gender imbalance may be self-correcting in the long run: ‘gross imbalance in birth rates between male and female children might over time create a scarcity value in girl children as potential brides and mothers of their children as to show prevailing sex-selection practices to be a short-lived phenomenon not justifying repressive laws’.Footnote ²⁰¹

While preference for sons might be typical of some parts of the world, it is also important to note that in European countries the demand for sex selection does not disclose embedded discrimination against women and does not pose a risk of gender imbalance in the population. Buxton has indicated that fears of societal gender imbalance are not borne out by empirical studies and case law; the overwhelming majority of families interviewed in a UK survey wished to be able to use sex selection in order to ensure an equal number of boys and girls in the family, rather than exercising a preference for one gender, and two couples notoriously litigating the right to sex selection in the UK sought embryo selection for family balancing reasons.Footnote ²⁰² For the same considerations, Richards has similarly suggested that a change in the overall sex ratio of British society would be unlikely to occur if couples’ preferences as to the sex of the children could materialise.Footnote ²⁰³ Savulescu and Dahl have also noted that, in the Western world, the demand for sex selection comes from couples who already have two or more children of the same sex and wish to have at least one child of the opposite sex; ‘since their choice is simply based on the gender of already existing children, and not on the absurd assumption that one sex is “superior” to another, the claim that these couples are making a sexist choice is an unjustified accusation’.Footnote ²⁰⁴ The family balance motivation and the comparable frequency of choices in favour of girls and boys mean that the practice of sex selection cannot be seen to contribute to gender discrimination in society.Footnote ²⁰⁵

From a rights discourse perspective, restrictions on procreative autonomy in order to promote gender equality fail to achieve their goal. Evidence shows that the practice of male selection continues on the black market in countries where there is a gender bias, and it has been suggested that this will be the case as long as the roots of inequality remain unaddressed; moreover, women will adapt their reasons to request an abortion to fit the normative framework (in the same way that English patients do in relation to the well-being ground in the Abortion Act 1967).Footnote ²⁰⁶ Restrictions on the exercise of a right that are incapable of achieving the legitimate aim pursued breach ECHR obligations, as indicated by the Strasbourg Court in B. and L. v. The United Kingdom.Footnote ²⁰⁷ The same principle should arguably apply to measures obtaining trifling and incremental benefits for society and therefore too remotely connected with the legitimate goal pursued. Colin Farrelly has rightly pointed out that, even if equality and gender balance are important aims, this is not a sufficient reason to prohibit the non-medical use of PGD; in fact, ‘one must also make a compelling case that restrictions on reproductive freedom are reasonable means for pursuing these reasonable aims’.Footnote ²⁰⁸ John Harris has perceptively suggested that the correct approach is to allow sex selection and revise the policy if severe gender unbalance in the population or other unforeseen harms emerge.Footnote ²⁰⁹

Gilbar has expressed concern that allowing social sex selection might open a floodgate.Footnote ²¹⁰ It is not clear that opening a floodgate – that is, the possibility of requests for other specific traits – is either an ethical problem or a distinct prospect in practice. Not many parents would face the costs, physical pain and medical risks (ova collection being an actual surgical procedure) in order to go through PGD and IVF just to secure a child of a certain sex or with eyes of a certain colour (if this were achievable). As Deech has noted, given the low chances of pregnancy from an IVF procedure (approx. 15 per cent), ‘it is a procedure to be resorted to only by those who are very anxious indeed about the future health of their embryo and prepared to risk a much lower chance of becoming pregnant than would occur naturally, in order to avoid an inheritable disease’.Footnote ²¹¹ For Farrelly, considering the invasive and expensive nature of the procedures involved, it is unlikely that equality and gender balance would be compromised by permitting non-medical uses of PGD, and therefore it makes more sense to adopt a provisional permissive attitude and re-evaluate issues if there are significant changes in the costs of PGD and what it can achieve.Footnote ²¹²

Criticising the weight attached by the UK’s Human Fertilisation and Embryology Authority to the widespread hostility to sex selection as a justification for its rejection, Harris has deftly stressed that the democratic presumption is that a practice should be allowed, unless the State can show that its prohibition is necessary to prevent harm, and a ban based merely on public opinion is ‘to formalise the tyranny of the majority’.Footnote ²¹³ He has also recalled that, in a liberal democracy, the majority is not allowed to decide what religion others are to follow, ‘because we rightly regard such matters as issues of personal liberty and fundamental rights’.Footnote ²¹⁴

One of the objections to sex selection, according to a survey conducted in the UK, is that it is ‘unnatural’ and amounts to ‘playing God’.Footnote ²¹⁵ The outdatedness of this argument has been considered earlier in relation to PGD in general; suffice it to recall that a heart transplant is also unnatural and a way of playing God by extending life beyond natural possibilities. Nor are all things unnatural morally wrong and a valid reason to prohibit conduct; harm to society or resulting children would need to be proven. A further argument reported in the literature is that ‘sex selection involves a diversion of (scarce and expensive) medical resources for nonmedical purposes’.Footnote ²¹⁶ This is obviously inaccurate if the treatment is privately paid for. Any elective surgery can be seen as diverting from medical purposes, yet such procedures are not illegal; the extent to which they should be financed by public funds is debatable; however, as long as there is demand and supply of such services on the private market, a legal ban is unjustifiable on the basis of scarcity of resources.

No case has been recorded in Strasbourg case law (or indeed in the practice of other international human rights bodies) concerning sex selection, whether therapeutic or social. It is worth noting, however, that the Council of Europe, in Article 14 of the Oviedo Convention on Human Rights and Biomedicine, has taken a firm stand against non-therapeutic sex selection: ‘The use of techniques of medically assisted procreation shall not be allowed for the purpose of choosing a future child’s sex, except where serious hereditary sex-related disease is to be avoided.’ This makes the prospects of successful litigation in Strasbourg asserting parents’ right to choose the sex of the future child highly unlikely.

4.4.2 Tissue Typing and the Creation of ‘Saviour Siblings’

Another controversial use of PGD is pre-implantation tissue typing for the purposes of creating a ‘saviour sibling’, that is, the selection of an embryo that is not only free from diagnosable diseases but also a potential cord blood stem cell donor for a seriously ill sibling.Footnote ²¹⁷ The main objections against the saviour sibling phenomenon could be seen as pertaining to the ‘protection of morals’ (the principle against treating human beings as means) and ‘rights of others’ (the future child’s emotional well-being). As Semon et al. have explained:

However, as Wilkinson has pointed out, ‘in order to fall foul of the Kantian anti-instrumentalization principle, parents must treat children solely or merely as means’; moreover, ‘the having of children for selfish reasons that are nothing to do with the interests of the (possible, future) child is ubiquitous’.Footnote ²¹⁹ A related moral objection is that against medical interventions carried out for the benefit of a third party rather than the patient; however, Merle Spriggs has noted that the objection is associated with invasive, risky or inconvenient procedures, whereas taking stem cells from the umbilical cord poses no risks or inconvenience to the baby.Footnote ²²⁰ Buxton also emphasises that, if a child is loved and valued, ‘it is of no consequence that it is also a source of donor tissue’.Footnote ²²¹ In addition, Buxton criticises the inconsistency of a legal system, on the one hand, allowing parents to terminate pregnancies if the foetus is not a correct tissue match but, on the other, preventing the use of PGD for tissue typing,Footnote ²²² an argument reminiscent of the Costa and Pavan assessment of PGD prohibition coupled with the availability of abortion of foetuses suffering from cystic fibrosis. Also seemingly inspired by the need for ethical consistency is Robertson’s claim that, if PGD is acceptable for the prevention of a serious genetic disease in the offspring, additional uses such as HLA matching with an existing sick child should also be deemed acceptable.Footnote ²²³ Robertson further argues that the parents’ treatment of a child born as a saviour sibling is unaffected and no harm arises for the child:

On the other hand, criticism of PGD and HLA matching often targets the fact that it involves the intentional creation of embryos that will not be transferred to the uterus, despite being healthy, which raises the issue of the embryo’s moral status. In this regard, Robertson et al. have pointed out that this occurs in all IVF procedures:

Providing treatment to a sick child is no less worthy of protection than addressing infertility, and if the creation of embryos not destined to grow into a foetus is acceptable for the latter, then there is nothing intrinsically wrong with creating embryos that will not be selected for implantation because they are not a match. Moreover, as Robertson et al. convincingly argue, PGD for HLA matching ‘does serve an important, life-affirming social purpose – that of saving the life of a child, reassuring parents that compatible stem cells are available, and preventing abortion’.Footnote ²²⁶

Finally, the risk of abuse is sometimes invoked as an argument against tissue typing. David King draws attention to the potential use of the technique for less sympathetic causes: ‘many people could benefit medically from matched tissue donation. … How will we feel when the tissue recipient is not another child, but an adult, maybe a parent or a more remote family member?’Footnote ²²⁷ Apart from the fact that saving a human life should not be endearing only when a child is at stake, the problem of organ donation exists with independence from HLA typing; any time a child is conceived, he or she may be a potential kidney or bone marrow donor for a relative. Whether the procedure involving donation is authorised depends on the medical and judicial assessment of the case, based on the risks of harm to the donor, the wishes of the child and so on. In the debate over novel uses of PGD, the excessive emphasis on speculative fear of slippery slopes, however palatably packaged under the precautionary principle, risks limiting reproductive autonomy for no sound reason.

4.4.3 Trait Selection, Genetic Enhancement and Misplaced Equalitarianism

Jackson powerfully argues that ‘it would be a mistake to restrict developments that can indubitably improve the lives of families that are at a risk of passing on debilitating genetic diseases in order to prevent the entirely speculative and inherently unlikely spectre of routine PGD for trivial behavioural traits’.Footnote ²²⁸ However, it is unclear whether procreative autonomy also extends to less compelling uses of PGD. At present, the ambition to use PGD in order to obtain a child with certain physical attributes, IQ level or artistic inclination remains confined to the realm of science fiction, despite vivid bioethical debates on the desirability of this practice.Footnote ²²⁹ If this were an option available to parents and they availed themselves of it, it would arguably be an acceptable exercise of their reproductive rights; in fact, it would not pose any risk of harm to those children, to existing children of the family or to anyone else in society. One possible limit would be the creation of embryos destined for destruction merely for the selection of preferential traits, without conferring any discernible benefit to the future child.

Although the ‘playing God’ objection is at its strongest when parents choose traits rather than avoiding illness, Richards rightly notes that it is difficult to justify the rejection of enhancement-oriented selection on the basis of its ‘hyperagency’ while at the same time accepting medical techniques ‘to repair damaged bodies, to replace defective genes or select out the abnormal’, which involve the same attempt to recreate nature.Footnote ²³⁰ Nonetheless, the pursuit of a child reflecting specific expectations is often referred to through ‘the pejorative terminology of “designer babies”, which implies the making of ethically unacceptable reproductive choices’.Footnote ²³¹

Even though intelligence, attractiveness and good moral character are not ascribable to one particular gene, and therefore embryo selection cannot guarantee such traits, more modest eugenic enterprises are possible, such as the US-based high-IQ sperm bank ‘Repository for Germinal Choice’ established in the 1970s.Footnote ²³² Should donors, aspiring parents and the medical facility be prevented from this enterprise in the name of equality and aversion against anything eugenic? Information on the appearance of the donor (height, eye colour) is routinely disclosed by sperm banks, and the prospective parents can choose based on the preference for a physical attribute; preference for intelligence should not be treated any differently. The choice of gametes from a high-IQ male for insemination cannot be seen as different from the same choice in the context of natural reproduction (a partner is often chosen to procreate with for his or her intelligence); these are individual pursuits that do not harm others and are private choices as opposed to a State-orchestrated programme for the combination of individuals with high IQ to improve the species.

One objection in connection with trait selection is that it would create injustice by giving children born with ART-facilitated desirable traits an upper hand on other individuals. This argument is problematic. The human being is in constant pursuit of self-improvement. Virtually everyone strives to defeat the natural lottery of birth and achieve the best available version of themselves. Elective surgery to improve one’s physical appearance is fairly common and neither contested nor banned. We also make relentless efforts to defy natural processes such as disease and ageing, through vaccination, prophylaxis and treatment, and this is generally considered to be a positive contribution of science and technology to human life and to society at large. Yet, moral objections are raised to seeking to alter some of these natural processes in our offspring before they commence, by improving genetic heritage rather than rectifying problems emerging after birth. The validity of the ethical distinction between what we currently and routinely do in an attempt to control nature and what ART has the potential to allow us to do is elusive. Rather, technological novelty in the sphere of human reproduction appears to be met with the instinctive fear of the unknown, and, as Somsen has observed, ‘fear alone does not justify the elevation of the status quo as policy objective’.Footnote ²³³

There may be, in addition, a certain reluctance to accept that the human being should be able to decide which life is preferable, by selecting the embryos for implantation based on their health and, possibly, traits. However, avoiding disease and extending life expectancy are seen as desirable objectives. If one has the technological ability to secure a healthier, longer or happier life for one’s child through embryo selection at the conception stage rather than mitigating problems after the birth, exercising that option seems to be eminently sensible. Nor should one be apologetic about aspiring towards improvement, either as an individual or as a society. The mere fact that health and education are recognised as human rights is already a powerful message that valuing health and the ability to learn is acceptable and need not be concealed. As Wilkinson has noted: ‘there is nothing wrong with sending out the message that we … prefer to create future populations with more rather than less health and welfare’.Footnote ²³⁴

While the term ‘eugenic’ is often employed with derogatory anxiety, an important distinction was drawn by Glover in respect of gene selection between private choice and State-regimented agenda: ‘We are right to be frightened by the dangers of any state eugenic programme. Positive choices of characteristics should be left to parents, subject to some possible “public-interest” regulation of the options available.’Footnote ²³⁵ According to Wilkinson, ‘the main reason for thinking of “eugenics” as a negative moral term is that most people who use it in contemporary debates do so to express condemnation, and it is rare for people who support embryo selection to describe it as “eugenic”’.Footnote ²³⁶ Legal bars will always carry a negative connotation; thus, Article 3(2)(b) of the EU Charter of Fundamental Rights (protecting the right to the integrity of the person) enshrines ‘the prohibition of eugenic practices, in particular those aiming at the selection of persons’. Without clear definitions and contextualisation, misunderstandings about eugenics are likely to be perpetuated.

Moreover, one would be hard-pressed to accept the distinction between non-relational good enhancement and positional enhancement, or the assumption that therapeutic selection is to be treated differently from enhancement;Footnote ²³⁷ for example, better health, although intrinsically desirable, is also a positional enhancement to the extent that it allows, say, mobility, which might be important in applying for a job, or indeed the ability to work long hours. Similarly, the assumption that height is necessarily a positional good is flawed; there are jobs for which height is desirable, and other jobs for which height plays no role or, indeed, it may be more convenient to be short (e.g. to be a ballerina). Enhancement sceptics also list appearance as a positional enhancement, but that presupposes that we all agree as to what is a better appearance, whereas aesthetical standards differ greatly. It is impossible to say for a couple who would like to choose traits such as blue eyes in their future child that they target a positional good, as their preference does not amount to objectively ‘superior’ traits. The assumption that certain traits are a relational good is, thus, an expression of prejudice. To legitimately restrict human rights, one needs more than mere speculation about what everyone perceives as desirable and an absolute advantage, and different traits arguably carry with them a different comparative advantage; certain jobs require physical strength, other jobs good memorisation skills, and so on. All individuals are valued precisely because of their different contributions to society, and therefore trait selection cannot be said to harm individuals with other skills. Human rights law provides protection for autonomous choice unless there is clear detriment to others.

Even for indubitably desirable traits, the concern that the use of genetic technology will engender inequalities between individuals is not a convincing objection against its use. As scholars have pointed out, human beings are already endowed differently in terms of physical strength, intellect or aptitudes, and natural inequality is not conducive to inequality of rights. In her critique of George Annas’ thesis,Footnote ²³⁸ Fenton argues that the biological differences among human beings ‘do not undermine the universality of human rights’; on the contrary, ‘it is the very purpose of human rights to render all human individuals equal regardless of such differences’.Footnote ²³⁹

Not only are physical, intellectual and aptitudinal inequalities unavoidable, but society does not seem to think that boosts to the immune system (vaccination), memory (lecithin pills, vitamins), body build (fitness programme, swimming pool) or beauty (elective surgery) go against social equality, albeit they are by no means equally available. As Robertson has pointed out, parents’ discretion in rearing children already includes enhancing physical attributes and educational abilities through means not available to all (special tutors, training camps, orthodontia, administration of growth hormones), and there is no rationale to exclude prenatal enhancement from parental choice.Footnote ²⁴⁰ If the ‘positional good’ argument had any validity, middle-class parents would be prevented from sending their children to expensive private schools because education is a positional advantage. To view any improvement in a child’s life as harm to someone else on the basis of competitive advantage (i.e. harm to others who lag behind due to financial disparity) would be an unacceptable width of the notion of harm. Only active and direct harm to others ought to be seen as amounting to harm in a Millian sense and justify restriction upon individual autonomy.

Invoking distributive justice as an objection to the choice of traits, because enhancement is not financially available to all, is no different from saying that, given the unequal access to medical treatment for diseases, the law should prohibit it for all, to avoid people of limited means being disadvantaged when compared to wealthy people; if no medical treatment is available, everyone has the same chance, based on genetic lottery, to overcome illness or not. If society accepts that medical treatment must not be banned, although not everyone can afford it, genetic enhancement should also be permitted. Spurious radical equalitarianism blocks progress by requiring a race to the bottom. Running water and heating are not available everywhere, and downwards equalisation means those should be abolished too. It further means that the law could impose the standardisation of every asset available to purchase, for example, car size, so that, in case of collision, neither of the parties has a better chance of avoiding harm; equal access to road safety would justify banning large-sized cars such as SUVs. Overemphasised equality would also justify abolishing private property and banning high-end fashion, for example, by placing a cap on the price of clothes. Accepting equalitarianism as superior to human rights would also lead us to conclude that a criminal system based on fines for minor misdemeanours is morally wrong, because fines have little or no impact on rich citizens, whereas their full punitive force is felt by impecunious offenders; we would possibly have to concede that all crimes should be punished with deprivation of liberty, because only this would penalise everyone equally: unlike wealth, freedom is equally distributed. But then everyone would be worse off. In the same vein, if unequal access to a good is seen as justifying a ban on scarce goods, judicial remedies should be abolished, too, because access to court requires costly legal representation, and not everyone can obtain redress. Admittedly, there is always an initial stage when a new technology is expensive and may not be available to all. When they were first introduced, flatscreen TVs were a luxury many could not afford. The same occurred with personal computers and mobile phones. Today’s society would be quite different if the development of communication technology had been obstructed by concerns that it gave an unfair advantage to some. Equality-driven objections to enhancement lead to absurd ramifications, depriving society as a whole of some of its most important achievements.

Similarly unconvincing is the objectification-of-the-child argument against trait selection, which views parents’ ability to ‘manufacture’ children with desired traits as depriving children of agency. Parents make personal choices for their children in the early stages of their development, including on medical treatment, religious practice and educational pursuits, and this is not seen as affecting the child’s agency. Rather, this is inherent in parental prerogatives, in turn an inevitable consequence of the fact that children lack the capacity to make certain decisions for themselves. Parents’ right to mould the child’s personality in accordance with ‘their own religious and philosophical convictions’, protected by Article 2 of Protocol 1 to the ECHR,Footnote ²⁴¹ cannot be seen as ‘commodifying’ children, even though it is intended to satisfy the parents’ expectations and preferences. Genetic interventions such as the choice of traits would be just another aspect of parents’ endeavour to protect the child’s welfare; as Robertson has suggested: ‘Enhancement could be seen as an act of love and concern, rather than a narcissistic effort to make the child a product or commodity.’Footnote ²⁴² Indeed, trait selection serves the same purpose as selection against disability, which is giving the child the best chance at a fulfilling life.Footnote ²⁴³ Glover aptly notes that the same rationale justifying selection against disability also legitimises genetic enhancement, namely the desire to allow children to flourish to the best of their potential: ‘making some enhancements may add to flourishing as much as eliminating some disabilities’.Footnote ²⁴⁴ Wilkinson has also criticised the artificial nature of the distinction between negative and positive selection, insofar as the positive feature selected is the absence of the negative feature screened out, that is, ‘selecting out low(er) intelligence (“negative eugenics”) might be the same practice as selecting in high(er) intelligence (“positive eugenics”)’.Footnote ²⁴⁵

The concerns about the routine and/or frivolous use of PGD by aspiring parents also seem grossly exaggerated. As Buxton has pointed out: ‘Given the limited availability, expense and low success rate of PGD, along with the lengthy and invasive nature of the treatment … it is highly unlikely that there will ever be much demand from individuals wanting to use the technique for “trivial” reasons.’Footnote ²⁴⁶ It should also not be assumed that everyone will want to predetermine the sex of the child, its height or the colour of its eyes; indeed, many parents do not wish to know the sex of the child before its birth, even though this is widely offered.

A more palatable equality-based argument is that States should endeavour to make access to ART more accessible by reducing its costs. The debate should not focus on banning trait selection but on whether genetic enhancement is so fundamental a good that it deserves public funding, in the interest of making it available to all. Since no such positive obligations exist at present in relation to medical treatment and educational opportunities, it is difficult to justify a claim to public funding for genetic enhancement; however, the same negative obligation currently governing parental choice of improvements through medical treatment and education should be recognised.

4.4.4 ‘Intentional Diminishment’: Future Children’s Welfare as a Limit to Parental Choice

The reverse aspect of parental choice concerns the (less likely) case of parents choosing to influence the child’s genetic make-up in such a way as to have a child born with the same disability as them – a phenomenon known as ‘intentional diminishment’, by contrast with offspring enhancement. Footnote ²⁴⁷ The literature has reported the astounding case of a deaf lesbian couple in the USA selecting a man with hereditary deafness as sperm donor to deliberately conceive a deaf child.Footnote ²⁴⁸ Naturally, for people suffering from congenital disabilities, it is difficult to appreciate what future children are deprived of (someone born in a prison would not value freedom, and someone living before the discovery of electricity would not be frustrated by its absence). Those who never possessed the sense of hearing are unable to appreciate the wealth of experiences it offers (sounds of nature, music, human voices) and the way in which it facilitates everyday life (e.g. crossing the street); this is not a reason to deny the future child access to all this. As Benatar and Archard have noted, the parents’ interest in the child being a member of their linguistic community (which may include the sign language community) must be weighed against the children’s interests in participating in the broader society in which they live; thus, if Spaniards in England not only taught their children Spanish but also prevented children from learning English, this would ‘close off important options’ for those children.Footnote ²⁴⁹

Glover has defended the choice of the deaf lesbian couple claiming that their child was not harmed, because, had they used a different donor, a different child would have been born.Footnote ²⁵⁰ Applying this logic, a woman who knowingly has intercourse with a man suffering from a serious sexually transmissible disease – as a result of which the child is born, for example, HIV-positive – did not harm the child, as that particular child would never have been born. If Glover’s analysis were correct, claims for ‘wrongful birth’ brought by the children themselves would need to fail.Footnote ²⁵¹ Parents choosing the child to be born with a disability can be said to have harmed the child by choosing from among potential lives one with the challenges posed by a physical impairment and missing out on an enriching experience and opportunities; the pregnant woman’s lifestyle can be said to harm the future child if it causes the foetus to be born with alcohol- or drug-related problems. The question in deciding if parental choice has harmed the child is not whether the child’s life is so horrific that not being born would have been preferable, but whether the mother’s conduct deliberately chose a less advantageous life for the child, or the ‘but for’ test. In the deaf lesbian couple’s case, but for the women’s choice of a sperm donor with hereditary deafness, the child would have had a chance to be born with all senses intact. Genetic choices – actions or omissions – can harm the future child just as much as abuse or negligence, during the pregnancy or after birth, resulting in permanent handicap.

Some bioethicists find it difficult to explain the moral wrongfulness of decisions affecting future children given that, but for those decisions, other people would have been born (better off but non-identical), and therefore those precise children have not been harmed; this is known as the ‘non-identity problem’.Footnote ²⁵² It seems, however, that the question should not be whether the child has been harmed by being brought into existence with certain congenital conditions, by comparison with no existence at all, but whether any conscious decision of the parents has caused the child to experience a worse existence than through genetic lottery. A woman choosing to procreate with a male partner infected with HIV, or choosing a donor exclusively based on his hereditary disease, is harming the future child. An analogy may be drawn with decisions affecting the healthy development of the foetus: the fact that the foetus is better off being born with a disability than not being born at all does not detract from the moral wrongfulness of deliberate conduct causing the future baby to suffer. The pregnant woman who drinks affects the future child even if, but for the willingness of the alcoholic woman to carry the pregnancy to term, the child would not have been born. It also cannot be said that the midwife who delivers the baby, albeit negligently causing a neurological impairment for the rest of the child’s life, did not harm the child because without her intervention the child would not have been born at all. As Deech and Smajdor note, for some the non-identity problem can be resolved by saying that ‘the person has been harmed if, on balance, his or her life is not worth living’, although ‘the problem of quantifying suffering’ ‘yields no obvious answers’.Footnote ²⁵³ This approach, however, downplays the moral wrongfulness of deliberately depriving the child of a significantly better quality of life.Footnote ²⁵⁴ Robertson has more convincingly argued that ‘the parents should have no greater right to produce that handicapping condition by prenatal genetic alteration just because they would not otherwise bring the child into the world’.Footnote ²⁵⁵ He also points out that ‘not providing a cochlear implant that might overcome a mild form of congenital deafness’ would constitute child abuse, because ‘the child would be denied a treatment for future functioning in society’.Footnote ²⁵⁶ Parental decisions affecting the child’s normal development and flourishment – whether at the stage of conception, gestation or after birth – warrant public scrutiny and intervention.

The question thus arises whether procreative choices harming the child should be banned, in the same way that choices for living children can be restricted – from medical treatment to education, and from religion to corporal punishment. With natural intercourse, this would not be feasible (e.g. preventing the choice of a partner suffering from syphilis), but the welfare of the future child can be considered when offering ART. In general, the choice of donor should not be precluded, unless the donor is exclusively selected on grounds of hereditary disability or disease. However, in Dickson v. The United Kingdom, the Strasbourg Court has accepted, in principle, that the welfare of the future child, born to a father serving a long sentence in prison, could legitimately limit his right to reproduce.Footnote ²⁵⁷ Parental choice needs to be respected before and after conception/birth, but it must find a limit in the future child’s welfare, and therefore it cannot extend to deliberate genetic diminishment. Article 24 of the UN Convention on the Rights of the Child, which recognises ‘the right of the child to the enjoyment of the highest attainable standard of health’,Footnote ²⁵⁸ includes an obligation to safeguard the child’s health when placed at risk by his or her carers; arguably, this provision could be read to require States to also give the child the best prospects of a healthy life by offering protection against harm at the conception stage, where harm depends on the authorisation of medical assistance.

Trait selection aimed at improving the child’s welfare cannot be seen as a selfish, consumerist choice; conversely, trait selection that sacrifices the child’s welfare to the parents’ convenience (e.g. to have a deaf child like them for better communication and belonging to the same community) breaches parental duties of care and is not worthy of protection. In the same way that courts can authorise treatment beneficial for the child despite the parents’ opposition, as well as deny authorisation of treatment sought by the parent because it is deemed harmful to the child, prenatal choices need to remain subordinated to the ‘best interests of the child’ principle. There is a certain symmetry between, on the one hand, respect for parental prerogatives in relation to child upbringing without tolerating child abuse and, on the other, respect for procreative choice without permitting exercises of discretion that result in harm for the future child.