Zika and Reproductive Rights in Brazil: Challenge to the Right to Health

Abstract

The Zika virus epidemic rapidly spread across Brazil and Latin America, gaining international attention because of the causal relationship between Zika and birth defects. The high number of cases in Brazil has been attributed to a failure of the state to contain the epidemic and protect the affected people, especially women. Therefore, the public health crisis created by Zika exposed a stark conflict between Brazil’s constitutional right to health and the long-standing violation of reproductive rights in the country.

Although health is considered to be a right of all in Brazil, women struggle with barriers to reproductive services and lack of access to safe and legal abortions. In response to the epidemic, women’s rights advocates have filed a lawsuit with Brazil’s supreme court that requires the decriminalization of abortion upon the diagnosis of Zika virus.

However, the selective decriminalization of abortion may lead to negative social consequences and further stigmatization of people with disabilities. A solution to the reproductive health crisis in Brazil must reconcile women’s right to choose and the rights of people with disabilities.

Since the first cases of autochthonous transmission of the Zika virus in Brazil in April 2015, the virus has rapidly spread, currently affecting more than 60 countries.^1,2 Because the symptoms of the infection, when present, are usually mild and rarely lead to severe clinical outcomes, Zika did not receive much attention in Brazil until November 2015, when an association between the virus and microcephaly was suspected.¹

Microcephaly is a birth defect in which newborns have smaller heads than expected, often reflecting developmental impairments that can lead to lifelong disability.² Currently, the World Health Organization (WHO) considers Zika to be causally associated with microcephaly and other neurologic conditions (i.e., congenital Zika syndrome [CZS]).³ The syndrome has some of the clinical features of other infectious causes of microcephaly but appears to lead to particularly severe neurologic impairment.⁴

In 2016, 130 701 confirmed cases of Zika infection were reported in Brazil, 11 052 of which were among pregnant women.⁵ In the same year, there were 2415 confirmed and probable cases of microcephaly in the country.⁶ The extent of the Zika virus epidemic and the potential severity of microcephaly led the WHO to declare a public health emergency of international concern in February 2016. On November 18, WHO’s director general ended the public health emergency with promises of supporting a “longer-term response mechanism” to address the disease and its consequences.⁷ A sustained response is necessary because the consequences of Zika for the thousands of people with long-term neurologic disabilities will persist in the country indefinitely.

Because there is no curative treatment for Zika virus infection or CZS, the bulk of the response against the epidemic have been preventive measures and guidance for those affected.⁸ Considering that the greatest repercussions are seen when the infection occurs during pregnancy, WHO’s response plan focuses on women of reproductive age and children with birth defects caused by Zika.⁸

INTEGRAL HEALTH AND REPRODUCTIVE RIGHTS

Since the institution of Brazil’s national unified health system in 1988, health has become “a right of all and a duty of the state.”⁹ However, despite this formal entitlement, Brazilians face barriers to accessing quality health services, particularly in the realm of reproductive health. These barriers are exemplified by the high percentages of unplanned and unwanted pregnancies (29.7% and 17.8%, respectively¹⁰), indicating family planning services are not effective in the country. Further, maternal mortality rates are still high, and the country faces several other maternal health challenges.¹¹

Moreover, abortion is a crime in the country (except in cases of rape, life-threatening risks to the mother, and fetal anencephaly), albeit a widespread practice. An estimate by Diniz and Medeiros indicated that more than 20% of women in Brazil will have had an abortion by the age of 39 years.¹² These abortions are often illegal and unsafe, and socioeconomically vulnerable women are more commonly affected by complications related to the procedure.^11,12 These data show that there are significant obstacles to reproductive rights in Brazil.

Since the emergence of the Zika epidemic, the WHO and other public health organizations have emphasized the importance of effective contraception and the need for women and couples living in affected areas to have access to information regarding safe pregnancy interruption.¹³ Since these recommendations were issued, Brazil’s public health authorities have advised women to avoid pregnancy during the epidemic.¹⁴ Nonetheless, the country criminalizes abortion and was not providing access to reproductive health services, which prompted the United Nations to call for “comprehensive sexual and reproductive services [including] contraception, emergency contraception, maternal health care, and safe abortion services” in affected areas.¹⁵ According to the United Nations, places that restrict these services, including criminalization of abortion, should undergo an “urgent review” of their laws and policies to ensure women’s reproductive rights.¹⁵

Therefore, there is a stark conflict between Brazil’s official recommendations on contraception and the actual reproductive services that its national health system provides. That is, an ethical quandary arises in which women do not have the means to follow official public health recommendations to avoid pregnancy. This situation reveals a tension between the theoretical and the actual access to health services in Brazil. To what extent is the responsibility to follow these recommendations being unduly put on the shoulders of affected women? Should individuals be held accountable for failing to comply with such recommendations?

The situation appears even more complex when considering that inadequate urban services, such as regular trash collection and piped water provision, contributed to poor vector control and thus to the occurrence of mosquito-borne epidemics in Brazil.¹⁶ Therefore, not only has the state failed to give people the resources to deal with the Zika epidemic and the consequences of microcephaly, but it also can be held responsible for the very origination of these health issues.

These ethical questions are built on a long-standing debate about the legal boundaries of the right to integral health in Brazil in the face of the criminalization of abortion and the fact that thousands of women fail to get proper assistance after undergoing unsafe abortions. In a situation of inadequate access to contraception and criminalization of abortion, the recommendation to postpone pregnancy without access to effective contraception may in fact be pushing women into illegal abortions.¹⁷

Understanding the current Zika epidemic as a failure of the state indicates an imbalance between the moral obligations of individuals and the liberal state, in which the former has been handling part of the latter’s obligations and the burdens that arise from them. Viens et al. see the concept of reciprocity as fundamental to establishing the moral legitimacy of state actions.¹⁸ In the case of Zika in Brazil, the lack of reciprocity, between what the state is delivering and what it is demanding that women and their families do, provides the moral grounds for a renegotiation of the social contract between state and individuals.

This is not the first time an infectious disease has sparked a debate about reproductive rights. In the middle of the 20th century, the identification of rubella as a cause of fetal malformations triggered a heated discussion about the legalization of abortion in Western Europe.¹⁹ In the 1980s, the emergence of HIV/AIDS also prompted the proposal of laws to expand access to abortion in Brazil.²⁰ Now the international attention raised by the Zika epidemic and microcephaly in Latin America can be an important source of political momentum for an “urgent review” of laws and policies that jeopardize reproductive rights in the region.

It is still unclear whether the declaration of the end of the public health emergency of international concern by the WHO,⁷ the decrease in cases of Zika and CZS in 2017,²¹ and the conservative political scenario in Brazil’s congress will be able to swing political support away from a rights-based approach to reproductive health in the country.²⁰ Still, the constitutional commitment to health is a strong argument in favor of ensuring reproductive justice in Brazil.

Therefore, the public health crisis unveiled by Zika contains important moral, legal, and political elements for transforming the state of reproductive rights in Brazil. Improvements should include the discontinuation of practices that criminalize women for dealing with their reproductive health needs while making an effort to reduce barriers to health care.

REPRODUCTIVE JUSTICE AND DISABILITY RIGHTS

In this context, the question of whether the emergence of the Zika virus justifies a change in the current abortion law in Brazil has arisen. In 2012, the country’s supreme court authorized women to have access to pregnancy termination in cases of anencephaly, a condition that is incompatible with life.²² At that time, the decision delivered by Justice Marco Mello highlighted the distinction between the crime of abortion and therapeutic pregnancy interruption. Anencephalic fetuses were considered to be in a situation analogous to brain death and, therefore, “without the potential for life.”^22(p55) Justice Mello continued: “The anencephalic fetus, even if biologically alive, for it is made of live cells and tissues, is juridically dead,” and thus “in this context, pregnancy interruption does not constitute a crime.”^22(p55) Therefore, the supreme court did not expand the right to legal abortion in cases of anencephaly. Rather, it considered pregnancy termination in these instances not to be an object of the current abortion legislation in Brazil.

Following this decision by the supreme court, in August 2016, advocacy groups filed a lawsuit with the supreme court to allow pregnant women infected with Zika who are experiencing psychological distress to have access to legal abortions. But although the expansion of the right to legal abortions in cases of Zika may indeed be a step toward decriminalizing the practice, it may also entail the stigmatization of children born with CZS.

The content of the 2012 decision is extremely important in the current debate on abortion and CZS in Brazil. To defend the decriminalization of abortion for women infected with Zika virus on the grounds of the previous decision on anencephaly would be to accept the argument that these conditions are clinically or juridically similar. However, Zika-related birth defects are not analogous to anencephaly, and the long-term repercussions of the former are highly variable.

Although the lawsuit does not limit access to legal abortions to women whose fetuses are diagnosed with malformations, the conceivable analogy between CZS and anencephaly it may entail certainly justifies criticism. There is a concern that such action can contribute to the stigmatization of people with disabilities.²³ Therefore, the attempt to expand women’s reproductive rights would be seen as a violation of the rights of people with disabilities. This intricate ethical question goes beyond the discussion of whether women should have the right to choose to terminate their pregnancies. In this situation, perhaps a limited expansion of the right to choose may pose even greater limitations of individual rights.

Previous disability scholarship has expressed concerns that legal instruments to allow abortions only in cases of fetal malformations may promote the stigmatization of people with disabilities. In an ableist context that sees disability as an undesirable future for which pregnancy interruption is expected, promoting women’s right to choose would lead to selective abortions, resembling eugenic practices.²⁴ The right to choose in a context of stigma and discrimination against people with disabilities could reinforce their exclusion from society.

Jarman, debating the tensions between reproductive justice and disability rights, argues that women carrying fetuses with birth defects should “have access to information about disability services and supports, access to members of the disability community, and access to other resources required to address the complexity of such a decision.”^24(p51) A just approach to the issue would ensure that women have the right to make an informed choice about whether to terminate the pregnancy without external pressure or constraints. When deciding to go on with the pregnancy, the state should provide her and her family with the resources and support to do so. According to the author, “Women often need more political support to decide against abortion and imagine rich futures for themselves and their families”^24(p51) when carrying fetuses with birth defects. Without widespread understanding about the complexities of the issue and an adequate provision of public health services, putting forth the expansion of abortion rights upon a diagnosis of Zika may strengthen an ableist perspective against the rights of people with disabilities.

Other disability theorists have tried to reconcile abortion and disability rights. Bringing attention to the tension between the right to choose and the possibility of selective abortions of impaired fetuses, Shakespeare posits, “There are various reasons why a termination might be appropriate. One of these is impairment, along with family circumstances, age, economic situation, and so forth.”^25(p671) Therefore, it would be inconsistent to defend the right to choose in all circumstances but impairment.

Women may consider a wide array of elements to make an informed decision about their reproductive future, including the presence or risk of fetal malformations. However, what is under discussion in the lawsuit is not the moral legitimacy of the arguments women may take into account when deciding whether to terminate a pregnancy. Rather, the lawsuit institutionalizes a distinct legal treatment for fetuses that are at higher risks of neurologic impairment. About that, Shakespeare states clearly, “The law should not discriminate between impaired and non-impaired fetuses.”^25(p671)

Not surprisingly, social movements and advocacy groups are divided on the issue. On the one hand, advocates for the rights of people with disabilities have stated that “abortion is a woman’s right that cannot be linked to the public trial over which lives are worth saving and which are not”²³ and that abortion decriminalization should not imply the “negation of people with disabilities.”²⁶ On the other hand, feminist groups have argued, “Eugenics happens when the state decides for women’s bodies” to conclude that “when women decide, there is no eugenics, there is freedom.”²⁷

This debate is of foremost importance because the stigmatization of pregnancies or children affected by CZS can lead to substantial negative health outcomes for these populations. In past years, sociology and public health research have shed light on the structural factors involved in the generation of stigma and its relationship to power or the lack thereof.²⁸ Other authors have even proposed stigma as a fundamental cause of health disparities.²⁹ Therefore, it would be blatantly inequitable to ensure proper access to health services to secure the well-being of some while promoting the stigmatization of other vulnerable social groups.

Considering the barriers to social rights already in place in Brazil, any further limitation to the rights of people with disabilities may have a particularly harmful impact on their health. Despite having the right to integral health care and social inclusion enshrined in Brazil’s constitution⁹ and in the United Nations Convention on the Rights of Persons with Disabilities,³⁰ people with disabilities face substantial barriers to accessing social rights and health care in Brazil. A report by the United Nations indicates that health services are often not accessible and that there are not enough health professionals trained to provide care to this population. The report also highlights the existence of discrimination and lack of accommodation in the public education system.³¹ Furthermore, other studies have indicated that access to social benefits and welfare rights are also limited in the country.³² Similar to the situation of women and reproductive rights, people with disabilities face a contradiction between their formal and actual right to health in Brazil.

Proponents of the lawsuit have also emphasized the need to care for individuals born with CZS and their families and the need for access to information and effective contraception.³³ Moreover, a medical diagnosis of birth defects would not be required to undergo a legal abortion, in an attempt not to frame the issue as a measure to prevent disabilities but rather as reparation for women harmed by the state’s omission. The access to abortion would thus be justified by the failure of the state to “prevent the suffering of the woman, to eradicate the vector, to inform, to ensure preventive measures in the context of the epidemic, and to commit to the rights of women and their progeny,”^33(p84) being analogous to pregnancy interruption in cases of rape (“humanitarian abortion”).³³ Accordingly, Brazil’s attorney general also compared abortion in the context of Zika to humanitarian abortions because it would protect the woman who suffers because of state omission, which leads to “identical levels of helplessness and suffering.”^34(p36)

This different framing is more than a rhetorical adjustment: it modifies the political content of the claim. The emphasis would not be on selective abortions of fetuses with microcephaly but on the physical and psychological suffering caused by state omission. Moreover, guaranteeing access to disability rights and welfare benefits would foster social and material environments that make an informed, inclusive decision about pregnancy termination possible.

Nevertheless, whatever the justifications advanced for it, it will be hard to separate the 2 issues. Because the association with birth defects was what put Zika on the global health agenda, expanding abortion rights in the context of the epidemic could be seen as an effort to prevent the birth of children with CZS. Moreover, public awareness and concern about the virus, which may give political momentum to the decriminalization of abortion, could also make the initiative in the supreme court backfire. In the context of fear and public commotion, it may be hard to disentangle the choice to terminate a pregnancy as a right from the discriminatory perception that impaired fetuses should be aborted.

Indeed, a recent poll in Brazil showed that 58% of the surveyed people were “very afraid” of being infected with Zika,³⁵ and fear can stigmatize and produce negative impacts on health, especially among socially disadvantaged groups.³⁶ In this scenario, expanding access to legal abortion to pregnant women affected by Zika may be widely interpreted as an effort to prevent the birth of impaired children and not as a timely expansion of women’s right to choose. To undertake this expansion without a thorough and careful public debate may backfire severely.

Moreover, disability theorists and advocates have contended that allowing pregnancy termination only in the particular situation of fetuses diagnosed with malformations could endanger future access to health care for individuals with disabilities. The burden of choosing to go on with such pregnancies may contribute to morally “legitimize not only the refusal [by the state] to support the care of disabled children, but also its denial of broader claims for public provision of health care.”^{37(p 183)} According to this point of view, advancing the access to legal abortions for pregnant women who have been infected by the Zika virus could jeopardize the items of the same lawsuit that aim to ensure social benefits and health care for people with CZS. This concern is especially relevant when considering the recent efforts by Brazil's government to limit the scope and funding of the unified health system.³⁸

The acts of omission by the state that have been used to justify access to abortion in the context of the epidemic are not substantially different from the ones that have inflicted Brazilian women for a long time. The Zika epidemic has only exposed the violation of fundamental rights and psychological torture that already afflict hundreds of thousands of women in Brazil. Therefore, decriminalizing abortion only in the context of Zika would be an incomplete and flawed solution.

A more just approach would ensure access to safe abortions as a woman’s choice or at least in any case in which the health of the mother is at risk, regardless of Zika or any other disease. In 2006, Colombia’s supreme court issued a similar decision, allowing abortions in any case of physical or psychological distress to the woman.³⁹ The First Panel of Brazil’s supreme court made a step toward this understanding in December 2016, when it deemed the criminalization of abortion in the first trimester to be incompatible with fundamental sexual and reproductive rights, individual autonomy, and the physical and mental integrity of women.⁴⁰ If Brazil is to decriminalize abortion, it must do so to protect the rights and integrity of all women, not only those affected by Zika.

The strengthening of reproductive justice need not be in contradiction with inclusive policies to reduce discrimination against people with disabilities. In fact, reinforcing the underprivileged status of a segment of the population can ultimately weaken the fundamental goal of an equitable society. When it comes to establishing basic rights, partial and inconsistent advances may do more harm than good. A solution for the reproductive injustice exposed by the Zika epidemic must not overlook the rights of people with disabilities.

CONCLUSIONS

The Zika virus epidemic detected in Brazil in 2015 rapidly spread to Latin America, leading the WHO to declare it a public health emergency of international concern because of its potential to cause severe and long-term clinical outcomes.¹ Along with several public health issues, Zika has put access to reproductive services and abortion back on the national agenda for reproductive justice. The debate on reproductive justice in Brazil is embedded in the Brazilian social and political landscapes and in the constitutional commitment to health as a universal right.

Brazil’s national health system is a great accomplishment of the Brazilian people. However, its inability to provide timely and adequate services has given rise to an important discussion about real and rhetorical access to integral health care in Brazil. The policy outcomes of this agenda are uncertain, as is the future of a country that is going through a moment of democratic discontinuity that endangers the federal commitment to the right to health and the provision of public services. Still, there is hope that the international visibility and public commotion around Zika and microcephaly will be able to shift the balance toward a more inclusive, rights-based outlook in the country.

The Zika epidemic has unveiled a long-lasting reproductive health crisis in Brazil. The solutions to this crisis must encompass structural and legal changes in the country to ensure proper assistance to the children affected by CZS and their families. Importantly, they must also include the decriminalization of abortion in Brazil, which should not be limited to women affected by Zika. Rather, it should be part of women’s autonomy and right to health. The unfortunate case of Zika should mobilize the unified health system to take a step forward to bolster reproductive justice in Brazil. Despite previous efforts, abortion legalization was never accepted as a public health necessity in the Brazilian political arena; the Zika crisis made it undeniable.