by Lisa H. Harris, Neil S. Silverman, and Mary Faith Marshall
The inequalities of outcome are, by and large, biological reflections of social fault lines (Paul Farmer)
Three paradoxes characterize the Zika virus pandemic and clinical and policy responses to it:
- Zika virus has been shown to cause severe developmental anomalies in the fetuses of infected women. As a result, both women and men in endemic areas are asked to avoid or delay pregnancy. However, access to effective contraception and safe pregnancy termination is either not available (especially for those living below the poverty line) or a crime for many women in Zika-endemic regions. The Brazilian government is confiscating international shipments of pills for medical abortion and is reportedly aiming to increase sentencing minimums for women who obtain abortions for fetal anomalies linked to Zika infection.
- Global approaches to pandemic planning and response, including those for the current Zika outbreak, are generally concerned with nominal fairness and the neutrality of procedural justice (i.e., response and allocation strategies equalize chances for those among the general population to receive benefits [or experience burdens]). Pandemic planners strive for systematic fairness by using (ostensibly) random processes (such as first-come, first-served or a lottery) to allocate resources for those who are similarly prioritized. However, pandemics disproportionately affect the disadvantaged, meaning that neutral approaches to global Zika virus pandemic planning and resource allocation will perpetuate and in fact increase existing gender, social, and health disparities.
- Historically, concerns for the “vulnerability” of pregnant women and fetuses have resulted in the systematic exclusion of pregnant women from research. In addition, political opposition to abortion has made it increasingly difficult to conduct research using fetal tissue. However, research on Zika virus in fetal tissue collected at the time of pregnancy termination or loss could potentially help many pregnant women and their fetuses. Reluctance to engage in such research potentially exposes all pregnant women and their fetuses to unquantifiable risk.
In this editorial, we examine and critique each of these paradoxes and reflect on the burdens that they inflict on women, especially pregnant women. International responses to the pandemic, and more specifically to the paradoxes embedded in these responses, have the potential to either advance reproductive justice or exacerbate existing reproductive injustice.
Background
While the Zika virus was first identified in primates in Uganda’s Zika forest in 1947, and sporadic outbreaks in humans in Africa and Polynesia have been reported since then, national and international awareness of the Zika virus exploded in 2015 with a dramatic increase in reported cases of neonatal microcephaly in Brazil. Brazil is the fifth most populous country in the world. The virus’ impact was magnified there due to the native presence of the appropriate host mosquitoes, an equatorial climate allowing for year-round mosquito transmission of the virus, and a largely non-immune population. In contrast to previously reported outbreaks in small, geographically isolated islands in the South Pacific, the introduction of Zika into a sprawling, more mobile Brazilian population presented an opportunity for the virus to spread into the larger geography of the Americas.
While Zika-related disease is not limited to pregnant women and their fetuses and newborns, in non-pregnant populations the majority of infections result in a self-limited viral syndrome lasting 7-10 days with no serious long-term implications. Like some other mosquito-borne illnesses, Zika has been associated with an increased risk of Guillain-Barre syndrome. However, the magnitude of illness in non-pregnant persons has been both qualitatively and quantitatively overshadowed by its dramatic impact on pregnancy.
After reports of increasing numbers of infants born with abnormally small heads in poorer, rural regions of northeastern Brazil, both epidemiologic and laboratory investigations linked Zika infection in the pregnant woman to microcephaly in the newborn infant. Zika-specific RNA has been documented in brain and placental tissue, as well as in tissue from early miscarriage in infected women. In addition, a recent prospective study following a cohort of pregnant women in Brazil with serologically-proven Zika infection showed that 30% of their pregnancies developed ultrasound-identified abnormalities with or without co-existing microcephaly. The range of severe anomalies resulting from Zika infection in pregnancy, especially infection contracted in early pregnancy, has had devastating effects on families already facing economic hardship. These challenges are magnified by ongoing needs for specialized and costly care as affected children grow older.
Paradox of reproductive rights
The growing Zika pandemic has led to calls for increased access to reliable methods of contraception. Public health officials in Colombia, Ecuador, Brazil, and Jamaica have issued recommendations advising women not to become pregnant for 2 years, while in El Salvador, announcements advised women to wait until 2018 to consider pregnancy. Even Pope Francis has acknowledged that in the setting of a pandemic infection that leads to serious fetal anomalies, modern methods of contraception may be advisable for Catholic women. In his words, “avoiding pregnancy is not an absolute evil.” However, at last measure nearly a quarter of women in Latin America who wished to avoid pregnancy did not have access to reliable forms of contraception. Recent reports from Brazil indicate that the government is confiscating shipments of pills for medical abortion, and is considering legislation to increase sentencing minimums (to 4.5 years) for women convicted of obtaining an abortion to prevent the birth of children with Zika-affected anomalies.
In the US, men and women who travel to Zika endemic areas have been advised by the Centers for Disease Control and Prevention to delay or prevent pregnancy after either symptomatic or asymptomatic Zika exposure. These recommendations are not based on extensive data, as an evidence base does not yet exist. Still, even in the absence of symptoms suggesting Zika disease, men and women are advised to wait at least 8 weeks before attempting conception. Even in the richest country in the world, delaying conception is not always easy. In the US, half of pregnancies are unintended, and approximately 10% of women who do not wish to become pregnant are not using a contraceptive method. The rate is as high as 18% among 15-19 year-olds. While the Affordable Care Act mandated coverage of contraception without out-of-pocket costs, this provision has been contested by some employers and political conservatives and its fate is uncertain as the US Supreme Court weighs competing claims. While recommendations to avoid pregnancy make sense as a Zika infection management strategy, these recommendations become senseless and unjust in contexts where access to reliable contraception is not guaranteed.
The same considerations are relevant to abortion. There are no known treatments for Zika infection in pregnancy. In such circumstances the choice is stark: either end the pregnancy or hope for the best. For many women around the world abortion is not an option; it is either not accessible, is so highly stigmatized that it is, in effect, restricted, or is criminalized. In the United States, where abortion is legal in all states, there are significant regional variations in law that affect women’s ability to access and pay for abortion.
The most recent update to Centers for Disease Control guidelines for US women and men does not include pregnancy termination as an option in its complicated algorithms for managing suspected or confirmed Zika infection. The algorithms abruptly end at “consider serial fetal ultrasound” when Zika testing is inconclusive or positive, and end at “retest for Zika virus infection” when ultrasound suggests abnormalities consistent with Zika infection. In neither case is abortion named as a reasonable path for women and couples whose beliefs permit it. That abortion is not validated as a reasonable option further stigmatizes that decision. World Health Organization guidelines, in contrast, do include abortion.
Paradox of pandemic response
Pandemics have historically disproportionately affected the most vulnerable people, highlighting lines of disadvantage based on race, economics, social class, and gender. Indeed, the Zika pandemic in Brazil resulted from a “perfect storm” of causation. In addition to providing a geographic home for vector mosquitoes, and having a concentrated but mobile population, Brazil is a country where social and economic divisions and disparities of wealth and resource availability make controlling Zika and its burgeoning impact especially challenging. Similar conditions are found in most of the countries where Zika has since spread.
Economic, gender, racial, and social disadvantage have effects beyond the tangible issues of mosquito control, prenatal care, and fetal surveillance. Access to contraception and abortion also vary with relative advantage/disadvantage. Unless policy changes occur that both loosen restrictions on abortion and destigmatize a choice for abortion so that women can freely use available services, we can expect the burden of maternal morbidity and death from unsafe abortion to increase.
In the US, Centers for Disease Control recommendations are good evidence that neutral procedural justice principles underlie recommendations, i.e., they treat all persons as similarly situated. Risk assessments and recommendations fail to differentiate between advantaged and disadvantaged populations. Disadvantage might affect the transmission and sequelae of Zika virus in a range of ways, including a woman’s ability to negotiate condom use with a male partner, people’s ability to access contraception and abortion, the availability of Zika serology testing or amniocentesis, and parents’ ability to summon resources to care for an infant with significant disabilities.
Paradoxes of research
For a virus that has been identified for nearly 70 years and has been linked to potentially devastating effects when contracted during pregnancy, we know surprisingly little about how to prevent it, how long women and men must wait after exposure or clinical infection to attempt pregnancy, and how to mitigate its effects on the fetus after infection. This pandemic acutely underscores the importance of broadening the applicability and acceptability of research in pregnant women and in fetal tissue, including samples derived via abortion. The best data we have to date linking Zika to the brain abnormalities described have been derived from tissue obtained from fetuses after termination and from products of conception after spontaneous miscarriage. Small but critical research cohorts need to be substantially increased to help develop the counseling and management tools needed to aid the pregnant women at greatest risk for detrimental impact from the sequelae of infection. In addition, as vaccines are developed to prevent Zika, pregnant women—both in the US and globally—should not and cannot be excluded from efficacy testing studies.
Summary
The Zika pandemic provides biomedical scientists, clinicians, public health advocates, and governments a unique opportunity to advance reproductive justice by addressing the paradoxes outlined in this essay. The circumstances in which pregnancies occur are morally relevant to women’s reproductive life decisions, to the provision of reproductive health care, and to the development of reproductive health policy. Whether the Zika pandemic might foster context-driven reproductive pandemic planning and response is yet to be determined. Maintaining the status quo will surely increase a range of global health disparities and further stratify reproduction, producing predictable and preventable outcomes in which some people receive the necessary care and resources to achieve family building while others are neglected. Women and men should be able to count on biomedical researchers to answer the questions that need answering without undue influence from political agendas. Women should be able to continue pregnancies and count on public health assistance and help for children with Zika-related disabilities, or prevent or end a Zika-affected pregnancy. Pandemic responses that don’t further these ends are morally unacceptable.