Reproductive Health and the Law

Chapter 1
Reproductive Health and the Law


Rebecca J. Cook and Bernard M. Dickens


Introduction


The chapters contributed to this book in tribute to Sheila McLean show how widely, indeed comprehensively, her scholarship and career have spanned and enriched the field at first modestly known as medical law, now often more ambitiously described as health law and policy. Sheila’s career vindicates this description, since she has not only advanced legal scholarship through her own writing and in sponsoring and inspiring writing by others, but has also contributed to national governmental, Scottish governmental and international and non-governmental organiation policy-making and advisory agencies. The books she has written, edited and to which she has contributed chapters cover the spectrum of human life, from assisted reproduction to end-of-life care, from choosing children to assisted suicide, and many areas of concern in between, both immediate, such as the right to life, and more prospective, such as xenotransplantation. In this chapter, we draw upon Sheila’s contributions to the advance of reproductive health law and policy, and the integration of modern perceptions of bioethics. There are different explanations of the rise of bioethics,1 but an observer of and participant in this rise, Warren Reich, has recorded that:


Fertility control was the major issue that spawned bioethics, more than any other single issue – certainly more than any high-technology-related issue in medicine. It was an issue that directly affected hundreds of millions of people; it dealt with quintessentially human suffering and fulfillment … involving ethical, religious, legal, and social controversy on the levels of social policy as well as personal ethics and ecclesiastical authority. The theologians, who were the first ethicists working in bioethics, cut their teeth on contraception/sterilization and abortion debates; and in a very real sense, much of the great energy that was turned toward bioethics around 1970/71 was energy that was diverted from the then-increasingly futile [Roman Catholic] church debates on fertility control.2


From 2000 to 2006, Sheila was a member, among many other activities, of the Committee for the Study of Ethical Aspects of Human Reproduction and Women’s Health (The Ethics Committee) of the International Federation of Gynaecology and Obstetrics (FIGO). One of us (RJC) was a founding member of this committee in 1985, serving until 1994, and the other joined the Committee in 2003, and will chair it from 2009 to 2015. As predecessors to, colleagues in, and inheritors of Sheila’s contributions to the Committee’s work, we want to reflect on how this aspect of her scholarship and guidance illuminates the challenges and prospects for advancement in the reproductive health of populations in general, and of women in particular.


The field has been energised not only by Sheila’s intellect, analytical rigor and wisdom, but also by her adventurous and vivacious personality. One of us (BMD) will long retain the memory, following an unusually exotic November 2005 FIGO Ethics Committee meeting in Luxor, Egypt, of driving with her into the Valley of the Kings and entering the tomb of Tutankhamen just hours after concluding ethical recommendations on confidentiality and privacy, human cloning and embryo research. This juxtaposition of consideration of a classical past, the pressing present and what may come in the future is an epitome of Sheila’s career in health law and policy.


International Recognition of Human Rights to Reproductive Health


The United Nations (UN) International Covenant on Economic, Social and Cultural Rights (ICESCR), a leading human rights instrument, provides in Article 12(1) that parties to the Covenant shall ‘recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’. Clause 2(d) requires parties’ commitment to ‘creation of conditions which would assure to all medical services and medical attention in the event of sickness’. The World Health Organization (WHO) understands ‘health’ to encompass ‘physical, mental and social well-being and not merely the absence of disease or infirmity’,3 but clause 2(d) concerns only medical services and attention. The WHO Constitution observes that ‘(t)he enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition’,4 but, drafted in 1946, the observation did not specify distinction of sex, gender or sexual orientation. Reproductive health is of particular concern to women, however, and the UN Convention on the Elimination of All Forms of Discrimination against Women (the Women’s Convention) accordingly provides in Article 12(1) that: ‘States Parties shall take all appropriate measures to eliminate discrimination against women in the field of health care in order to ensure, on a basis of equality of men and women, access to health care services, including those related to family planning’.5 Women’s related claims to reproductive rights and reproductive health have become controversial, and bitterly contested, particularly by conservative religious hierarchies and agencies. The Roman Catholic Church, through its unified, singular leadership, has been most outspoken in its condemnation of the concept of ‘reproductive health’, and opposed the Convention’s adoption first at the UN Conference on Population and Development, held in Cairo in 1994, and again at the Fourth World Congress on Women, held in 1995 in Beijing. The Catholic hierarchy, of course, excludes women, but the Holy See, having Permanent Observer status in the UN, is entitled to attend UN meetings, and had the largest delegation at the Beijing Congress. The concept of reproductive health, modelled on the description of ‘health’ in the WHO Constitution, describes ‘reproductive health’ as:


a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and to its functions and processes. Reproductive health therefore implies that people are able to have a satisfying and safe sex life and that they have the capability to reproduce and the freedom to decide if, when and how often to do so.6


Catholic church leaders, having renounced a ‘sex life’ of their own and tolerating one for others only within lawful marriage for the purpose of procreation, were actively hostile to the Beijing Declaration in its continuing explanation that:


Implicit in this last condition are the right of men and women to be informed and to have access to safe, effective, affordable and acceptable methods of family planning of their choice, as well as other methods of their choice for regulation of fertility which are not against the law ….7


The reference to family planning has long been understood to embrace contraception and contraceptive sterilisation, but opponents of family planning often seek to add stigma by extending the reference to cover abortion, so that, for instance, family planning centres, such as Planned Parenthood affiliates in the USA, can be condemned, restricted or defunded, and picketed as abortion clinics. However, the Beijing Declaration rejected abortion as a method of family planning. The Declaration included abortion in the subsequent phrase ‘other methods … for regulation of fertility’, emphasising their acceptability only when ‘not against the law’.


In recent times, family planning has emerged from the negative context of fertility control through contraception and sterilisation to include fertility promotion. In the past, this referred to fertility preservation, but now includes the varieties of overcoming infertility subsumed under the generic description of ‘test tube’ or in vitro fertilisation (IVF). Forms of IVF are now widely available, although often at high individual cost, as a branch of ‘luxury medicine’, since publicly and privately funded health insurance services may not follow the WHO in characterising infertility as a disease.8 In 2000, the Constitutional Chamber of the Supreme Court of Costa Rica ruled IVF constitutionally prohibited in the country for violation of an embryo’s human right to life from conception, with which fertilisation was assumed to be synonymous, due to the tendency of IVF techniques to leave surplus embryos naturally to disintegrate when not transferred to women’s bodies. The prohibition was challenged before the Inter-American Court of Human Rights for violations of the American Convention on Human Rights. The Court’s judgment was released in November 2012.9


The Court distinguished ‘fertilisation’ from ‘conception’, and observed that ‘the term “conception” cannot be understood as a moment or process exclusive of a woman’s body, given that an embryo has no chance of survival if implantation does not occur’.10 The Court rejected the claim that ‘fertilisation’ is included in a reference to ‘conception’, since the latter is dependent on an embryo’s implantation in utero, while the former is not. In an extensive review of the jurisprudence of the European Court of Human Rights, the Court noted that ‘the regulatory trends in international law do not lead to the conclusion that the embryo should be treated in the same way as a person, or that it has a right to life’.11 This accorded with the Court’s earlier finding that ‘the historic and systematic interpretation of precedents that exist in the inter-American system confirms that it is not admissible to grant the status of person to the embryo’.12


The Court ruled that denying infertile couples access to IVF in order to protect un-implanted embryos, in violation of individuals’ human rights to private and family life, and to found and raise families, was disproportionate and unjustified. The Court further found that denial constituted indirect discrimination on grounds of disability and financial means, since those with means could obtain IVF services by travel to other countries, and in particular that it constituted indirect discrimination in effect against women, since the burden of childlessness falls with distinctive impact upon women. The Court shared the view of WHO that ‘the role and status of women in society should not be defined solely by their reproductive capacity’,13 and found discriminatory gender stereotyping incompatible with international human rights law.14 It accepted the evidence of social science, however, that, particularly in Latin America, women outside convent life not discharging duties of motherhood attract some disdain and loss of esteem in family and communal life.


The European Court of Human Rights’ (ECtHR) denial of status and rights to human embryonic life is confirmed in its protection of rights to refuse non-consensual parenthood. In the Evans case,15 for instance, one former partner in a couple that had preserved embryos from IVF treatment refused consent to their transfer to the other former partner, although they represented the latter’s only chance to have her own genetically-related child due to removal of her ovaries for a precancerous condition. The ECtHR upheld UK legislation requiring gamete donors’ consent to embryo transfer, and the consequent wastage of the embryos. The issue of what legal status in vitro embryos possess, since they are not ‘persons’, had been timorously approached in 1992 by the Tennessee Supreme Court,16 reversing a trial judge who had described an embryo as ‘a human being existing as an embryo, in vitro’, by saying that it was neither a person nor property, but sui generis, in an ‘interim category’ over which there were interests ‘in the nature of ownership’. More recently, however, courts have accepted that in vitro embryos are a species of legal property,17 leading to issues of their disposition for instance upon divorce.18


The loss or wastage of human embryos is an inescapable incident of individuals’ exercise of their human rights to natural reproduction, the loss being quite accurately calculable in IVF. An expert witness before the Inter-American Court of Human Rights estimated ‘[o]f every 10 embryos spontaneously generated in the human species, no more than 2 or 3 are able to survive natural selection and be born as a person. The remaining 7 or 8 embryos die in the female genital tract, generally without the parents’ knowledge’.19 More significant from a human rights perspective is the rate of avoidable pregnancy-related maternal death and morbidity associated with denial of women’s rights to reproductive health.


The estimated rate of maternal deaths worldwide, meaning a woman’s death while pregnant or within 42 days of termination of pregnancy, by whatever means,20 fell to 273,465 in 201121 from about 358,000 in 2009.22 Satisfaction is undermined, however, by recognition of the high proportion of deaths that were avoidable had countries met the responsibilities they have assumed under international human rights conventions, and their own national constitutional and domestic laws, regarding provision of maternal and related reproductive health services.23 Associated with maternal mortality are deaths of newborns, infants and dependent children.


Underlying many causes of maternal mortality and morbidity is discrimination against women, from their births and throughout their reproductive lives. The UN Human Rights Council has recognised preventable maternal mortality and morbidity as a human rights violation,24 and in response to its request, the UN High Commissioner for Human Rights has prepared guidelines on applying human rights to reduce preventable maternal deaths and morbidity.25 Direct causes of these dysfunctions of pregnancy include haemorrhage, infection, high blood pressure, unsafe abortion (frequently associated with illegality) and obstructed labour, which collectively account for an estimated 80 per cent of maternal deaths worldwide, overwhelmingly in resource-poor countries.26 Indirect causes include malaria, anaemia and HIV/AIDS that complicate or are aggravated by pregnancy, which contribute to the remaining 20 per cent.27 Further, incentives to promote the welfare of children that hospital administrators intend to be born rather than miscarried may deny women the care they require while pregnant.28


Discrimination against female children and women that conditions their vulnerability to maternal mortality and morbidity was long considered so culturally ingrained as to be not just a characteristic but rather a prerequisite of social order. Discrimination was non-justiciable, not least because male-dominated legal systems were at best unaware of or insensitive to such discrimination, and at worst perpetuated or reinforced the discrimination.29 In recent times, however, courts and human rights tribunals have been seized with claims of human rights violations due to gender discrimination. Pioneering claims were brought by empowered women who suffered employment discrimination due to demeaning workplace stereotypes and mind-sets,30 but more recently claims have been presented by and on behalf of women marginalised by poverty and/or minority status in their communities who have suffered discrimination in access to reproductive healthcare.


For instance in 2010, the Inter-American Court of Human Rights, addressing multiple claims of violations of the American Convention on Human Rights presented by an indigenous community in Paraguay, held the state responsible for an avoidable maternal death, observing:


[T]he Court declares that the State violated the right [to life] provided in Article 4(1) of the American Convention … because it failed to take the required positive measures … within its powers, that could reasonably be expected to prevent or to avoid the risk to the right to life. Consequently, the death of the following individuals are attributable to the State … Remigia Ruiz … who died from complications while in labor in 2005, at 38 years of age, and did not receive medical attention.31


This finding represents the first time that this Court has held a state responsible for a preventable maternal death. The Court ordered the defendant state to provide special medical care for pregnant women both pre- and post-natally.


In 2011, the first decision of an international human rights treaty-monitoring tribunal was written holding a state and government accountable for a preventable maternal death. The Committee on the Elimination of Discrimination against Women (CEDAW), monitoring compliance with the Women’s Convention, found Brazil in violation of a woman’s right to appropriate services in connection with pregnancy, confinement and the post-natal period, and liable for discrimination in her accessing care. In the Alyne case,32 an impoverished Brazilian national of African descent, aged 28, died following the stillbirth of an estimated 27-week-old fetus. On 11 November 2002, in her sixth recorded month of pregnancy, she was treated for severe nausea and abdominal pain at a private clinic, and scheduled for blood and urine analysis two days later. However, her condition worsened, and on 13 November, when no fetal heartbeat was detected, the stillbirth was medically induced, and Alyne became disorientated. On the following day, when curettage surgery removed remaining placental tissues, she further deteriorated, with severe haemorrhaging and low blood pressure, and on 15 November, doctors at the clinic proposed to transfer her to a better-equipped public hospital. That hospital, however, refused to use its only ambulance in the evening to transport her, and her family lacked means to provide private transport, such as by taxi. Alyne waited eight hours, in a critical condition, the last two with symptoms of coma, before reaching the public hospital. There, she became hypothermic, had acute respiratory distress with intravascular coagulation, and was resuscitated when her blood pressure fell to zero. No bed was available for her, and she was placed in the emergency room hallway. Her medical records had not been transferred with her, so the treating physician was given a brief oral account of her symptoms. Alyne died the following day, the official cause of death being recorded as internal bleeding.


CEDAW measured the circumstances of the death against the standards not of medical practice, but of human rights, and took account not just of Alyne’s hospital care, but also of the social conditions in which she lived, and died. The Committee also noted that Alyne’s family filed a civil claim in court for material and moral damages in February 2003, three months after her death, but the claim was either ignored or denied by the time the case came for decision by the Committee, eight and a half years later. The Committee found that, as a matter of law, Brazil was directly responsible for:


a. its failure to monitor private healthcare institutions to which medical services were outsourced;


b. the failure to meet Alyne’s specific, distinctive health needs during her pregnancy;


c. failure to address her status as a woman of African descent and her poor socio-economic circumstances; and


d. failure to comply with state obligations to ensure effective judicial action and protection for her or posthumously on her behalf.33


In Brazil, the state’s responsibility regarding both public and private healthcare institutions is strongly anchored in its Constitution, which professes the right to health as a general human right. The Committee found that the State’s failures to take measures to ensure appropriate pregnancy services violated rights to non-discrimination, on grounds of sex, racial origin and poor economic status, and the cumulative failures of Alyne’s care finally violated her human right to life itself. Brazil did not contest many of CEDAW’s findings of lack of appropriate pregnancy-related care, and accepted the Committee’s requirements of detailed remedies to reduce preventable maternal deaths. It remains to be seen whether the CEDAW findings of human rights violations and of remedies required for reform, in Brazil and other countries whose compliance with the Women’s Convention CEDAW monitors, will prove effective to promote women’s pregnancy care and wider reproductive healthcare.34


Fertility Regulation


The exercise of individuals’ choice over their reproduction has historically been impaired by the sexual nature of reproduction, and cultural tendencies, reinforced if not more directly conditioned by religious attitudes, to see human sexuality through the lens of sin. In the nineteenth century, sending birth-control information by mail offended obscenity laws, and promotion of contraception was imprisonable.35 To approach reproduction as a matter of personal choice rather than divine will or intention was seen as an impertinent human arrogation of supernatural design, and courts have been reluctant to treat medical negligence resulting in the birth of a healthy child as other than a blessing.36 The jurisprudence and academic commentary37 associated with the House of Lords’ 2002 decision in McFarlane v. Tayside Health Board38 reflects moral discomfort in assessing compensation for a couple’s unplanned parenthood when they intended to engage in non-procreative sex.


The legality of providing and acquiring contraceptive services has become relatively non-contentious in industrially-developed countries in recent years, although still controversial where restrictive professional, religious and other arguments are socially and/or politically influential.39 An internationally publicised instance of such influence was the ban on artificial contraception initiated in 2000 by the mayor of Manila, in the Philippines,40 and more recently in the USA the requirement of contraceptive coverage in health insurance plans under the Patient Protection and Affordable Care Act, from which religious employers were exempted, has triggered litigation by for-profit commercial employers not wanting to provide health services contrary to their personal religious convictions.41


Related concerns include sex-education in schools, age-eligibility to receive contraceptive prescriptions, and public provision of or subsidies for contraceptive products. In international human rights conventions, there are no explicit requirements to ensure services to members of low-income populations. Under the Women’s Convention, for instance, states accept the obligation, in accordance with Article 12(1), ‘to ensure … access to health care services, including those related to family planning’, but such access may remain dependent on having the means to pay for them. State provision of unpaid services is limited, under Article 12(2), to ‘ensure to women appropriate services in connection with pregnancy, confinement and the post-natal period, granting free services where necessary’. Although limited, this requirement may include post-natal contraception, which may be desirable for birth-spacing between pregnancies. Short birth intervals endanger survival of women, their subsequent fetuses in utero and their newborn children.42


Long-acting contraceptive means, such as intrauterine, injectable or implantable contraception, are convenient for women who know how to adjust to their use, but raise legal and ethical concerns. Safe removal at times of patients’ choices may be unassured in some settings, and contraception by injectable or implanted means can be operator-controlled rather than patient-controlled. That is, they may be applied at the preference of care-givers, for instance for mentally-disabled women or those unable to resist superiors’ pressure, rather than by recipients’ free choice. They raise a range of legal concerns regarding informed consent, free consent (meaning non-coerced and not improperly induced consent), and capacity to consent or to give assent, by those who lack capacities to give legally effective consent.


In view of women’s liability to menopause, usually in their 50s, long-acting contraception can merge into sterilisation, which has raised its own historical controversies,43 and remains an active focus of human rights litigation in modern times, particularly in Europe.44 For instance, until the 1970s there was evidence of coercive sterilisation of disabled women in Scandinavian countries.45 In November 2012, the ECtHR found Slovakia in violation of the European Convention on Human Rights (ECHR) Articles 3 (prohibition of inhuman or degrading treatment) and 8 (right to respect for private and family life) for the involuntary sterilisation of Roma women,46 the last in a sequence of three cases before the Court on the same topic. In 2009, the Czech government expressed regret regarding illegal sterilisation, largely of Roma women.47 It is depressing that it is taking so long to end the wave of oppressive eugenic policies that spread across the industrialised world and beyond in the 1920s,48 now seen through the lens of experience of Nazi racial laws and practice.49 However, the notorious 1927 judgment of the US Supreme Court in Buck v. Bell50 has not been overruled, and shame is muted in the US and Canada that this judgment and related laws allowing eugenic sterilisations without patients’ consent were cited at the Nuremberg War Crimes Tribunal in explanation and defence of German practice.51


Attitudes have now evolved to recognise the distinction between sterilisations performed on individuals, and those performed for patients. The former, often undertaken for punitive or eugenic reasons, are acknowledged to be, and to have been, wrong. In 1996, for instance, the Canadian provincial government of Alberta, when sued for an unlawful sterilisation performed in 1959, accepted the mental competency of the woman sterilised as mentally impaired, acknowledged the human rights violation under its historical laws that authorised the procedure, admitted legal liability, waived an available full defence that the claim was outside the limitation period, and litigated only on the quantum of damages. The judge denied punitive damages, observing that the claim ‘was made too late, and the government could have used this delay as a complete answer … This deliberate abandonment of a complete defence is in the nature of an apology. Indeed, it is more than an apology; it is an amendment – a real effort to make things right’.52


In contrast to eugenic sterilisations are contraceptive procedures, including vasectomies, that may be performed for patients, on their competent, free and adequately informed consent. Failures of due disclosure, resulting in pregnancy or childbirth, lead to as much litigation as failures to perform procedures in accordance with legally required standards of care. Much legal literature now addresses claims variously described as wrongful conception, wrongful birth and even claims by or on behalf of usually seriously impaired children for wrongful life itself.53 Sheila McLean has addressed many issues in this area in journal articles54 and edited books.55 Informed consent issues include disclosure of irreducible minimum rates of failure, such as from spontaneous recanalisation of severed fallopian tubes, and times following vasectomy before which intercourse may still transfer motile sperm.


Most legal systems, not only in economically-developed or industrialised countries, have developed jurisprudence on wrongful conception and wrongful birth claims, including the standard tort issues of duty of care, breach of duty, identification and causation of damage and quantification of damage. Most intellectually challenging, however, not only for lawyers but also for philosophers, bioethicists, healthcare practitioners, theologians and others, is the so-called ‘wrongful life’ action. This may be the description given, and, often by plaintiffs, resisted,56 when a claim is presented by or on behalf of a person, often a young, severely impaired child, that he or she should not have been allowed to be conceived or, having been conceived, should not have been allowed to be brought to term and born; that is, that he or she should have been aborted. This claim sometimes implies that another person should have been born instead, such as that conception should have been advised to be delayed while the mother carried a temporary transmissible infection.


Apart from a sometimes judicially expressed visceral repugnance that such claims may induce,57 they raise the complex issue of whether the difference between impaired existence and ‘the utter void of nonexistence’58 can be quantified in monetary terms. With a few exceptions, courts are inclined to dismiss these actions.59 Even if some measure of perhaps token, representative or non-quantified damages might be awarded, it may be that, as Proctor J ruled, ‘[s]ubstantial policy reasons prevent [a court] from allowing tort damages for denial of the opportunity to take an embryonic life’.60 Nevertheless, challenging arguments may be raised in debate,61 and new perspectives may be offered on how wrongful life claims are best approached,62 including from outside the Common Law tradition, since the full Chamber of the French Cour de Cassation has allowed a child’s wrongful life claim to succeed.63