Tuesday, June 21, 2016

The plague at our doorstep: ethical issues presented by the Zika virus outbreak

By Ryan Purcell

Image courtesy of Flickr user Day Donaldson
“Never before in history has there been a situation when a bite from a mosquito can result in such a devastating scenario.” So says Tom Frieden, director of the US Centers for Disease Control and Prevention (CDC). The Zika virus has captured headlines since late 2015, when word spread north from Brazil that a virus, new to the Americas, may be silently causing alarming neurodevelopmental disorders in newborns. Now, the southern United States is preparing to confront the mosquito-borne illness, which “may become the first great plague of the 21st century.” As public health officials continue to work to mitigate the impact of what the World Health Organization has declared a “Global Health Emergency”, there are several important ethical issues that must be considered. These include a women’s reproductive rights, disability rights concerning those most affected, and the growing realization that poverty-stricken regions and neighborhoods will bear a disproportional burden from this disease. Each of these concerns deserves much more attention than could be provided here. My current aim is merely to point out key issues to stimulate discussion.

In a letter to the editor published in February in The Lancet, Monica Roa of American University made a compelling argument for increased attention to women’s reproductive rights in Latin America in response to the Zika virus outbreak. According to Roa, the recommendation by Columbia, Ecuador, El Salvador, and Jamaica for women to delay pregnancy is woefully out of step with the unfortunate realities of life for many women in these countries. For example, the rate of unintended pregnancy is extraordinarily high due to significant cultural and economic barriers to quality sexual and reproductive health education and services. Moreover, rates of sexual violence are particularly high, contributing to “large groups of women who do not have control over their sexual and reproductive lives.” The UN High Commissioner for Human Rights Zeid Ra’ad Al Hussein, also weighed in: “the advice of some governments to women to delay getting pregnant, ignores the reality that many women and girls simply cannot exercise control over whether or when or under what circumstances they become pregnant, especially in an environment where sexual violence is so common.” Further, the virus can remain in semen even longer than in blood, so why are men also not being advised against impregnating women? To make matters worse, access to abortion services is extremely limited (in some countries it is illegal), and where it is an option for women, many do not understand how to access services.

Termination is not necessarily the answer for many women who have been infected with Zika virus during their pregnancy. First, while it has been confirmed that Zika virus infection in pregnant women can cause microcephaly, it does not always do so. One of the many remaining unknowns is the level of risk to the fetus during maternal infection. Even when a fetus is diagnosed or an infant is born with microcephaly, the disorder can have a range of severity and some children, despite smaller-than-normal head size, have no evident disability. Microcephaly is thankfully rare, but because of this it is not particularly well-understood and support services for these children and their parents are limited, even in wealthy countries. Parents of some children with microcephaly point out how their kids live lives consistently above and beyond doctors’ negative expectations for them in terms of quality of life and lifespan.

Head size comparison of a child with microcephaly and a child
with typical brain development, image courtesy of Wikipedia

The headlines bordering upon hysteria have proven especially difficult for some parents of children with the disorder. As one mother wrote, “The endless pounding of Zika stories, and the descriptions of the grim futures that await the families of microcephalic children, chip away at a façade I’ve built by surrounding myself with friends, family, and a community who value and love my son.” For disability rights advocates, the insinuation that microcephalic fetuses should be aborted is frustratingly familiar. Improving access to sexual health services for women in Latin America should be motivated by a desire to allow women to exercise more control over their lives, not to avoid a “dystopian” future of disabled children. Unfortunately, many of the confirmed cases of microcephaly caused by Zika virus are extremely severe and for some of these children the prognosis may indeed be grim. In severe cases, children can experience seizures, have profound developmental delay, and have visual and motor problems, all of which can be lifelong conditions. Though to quote one parent commenter, “I have a child with microcephaly who is witty, loving, adoring, occasionally a pain in the butt, nosy, and giggly. He makes my world so much better…Some of the coverage has been so painful and callous and ignorant.” It is, however, a reality that in resource-limited settings like rural northeastern Brazil where the uptick in cases was first noticed, the disorder will present a tremendous challenge for parents.

Along these lines, an additional disturbing issue that is now receiving increasing attention is that the Zika virus will likely disproportionately affect those who have the least resources to confront it. In the American South, homes in wealthy areas are air-conditioned with screened windows and well-maintained grounds without standing water. In some cities, like Houston for example, poor, economically-depressed neighborhoods provide excellent breeding areas for the urban, Zika-carrying Aedes aegypti mosquitoes. These types of neighborhoods are even more common throughout poorer urban areas of Central and South America, and are predicted to see higher rates of Zika virus transmission. The unfortunate reality that this outbreak may have an outsized impact on disadvantaged neighborhoods is an ethical issue and an expedient response is an ethical imperative. Republican leaders in the US House of Representatives have stalled passage of a funding measure for Zika response. Would those dollars be freed up faster if Capitol Hill inhabitants were bearing the brunt of this epidemic?

Several research groups are currently at work on a vaccine for Zika, but this will take time to reach the market. The need to have a vaccine, especially one that is safe for pregnant women, presents an additional obstacle to overcome. Nevertheless, it is thought that individuals who have been infected – many of whom report relatively minor symptoms, if any – may be immune to future infections, though this remains to be seen. In the meantime, the issues outlined above need to be addressed. There is a great need for improved sexual and reproductive health education and access to services to give women more control over their futures. There is also an urgent need to better understand the risks to the fetus when a pregnant woman is infected, and better or earlier predictors of prognosis for children born with microcephaly. Amid these needs there are plenty of opportunities for positive outcomes from this outbreak – to better understand and accommodate individuals with developmental disabilities, to shine a light on lagging reproductive rights, and to see more clearly what makes certain segments of the population especially vulnerable.

Want to cite this post?

Purcell, R. (2016). The plague at our doorstep: ethical issues presented by the Zika virus outbreak. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/06/the-plague-at-our-doorstep-ethical.html

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