The face of Zika: women and privacy in the Zika epidemic

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series.

By Monica List, DVM, MA

A quick online search for “Zika” reveals two kinds of images, those of vectors and those of victims. Images of Aedes sp. mosquitoes, vectors of the Zika, Dengue, and Chikungunya viruses, dominate the virtual landscape, followed closely by images of infants and children with microcephaly, as well as women; some pregnant, some caring for children with Zika-related congenital conditions. This abundance of images of children and mothers affected by Zika is not surprising, as they are, in fact, the populations most seriously harmed by the virus. There is now enough evidence to infer that prenatal Zika virus infection can cause microcephaly and other brain anomalies in the developing fetus (Rasmussen et al 2016). Embedded in public health communiques and media coverage, these publicly available images are undoubtedly an important part of the narrative of the Zika epidemic; they provide a face and a human dimension to a risk often perceived as distant and abstract by residents of latitudes currently unaffected by the virus. In this sense, the images perform an important role; they humanize, contextualize, and help raise awareness of a serious disease that is expected to continue to spread (CDC, 2016). Regardless of the many ways in which these images can improve our understanding of how Zika is affecting the lives of people worldwide, and may eventually affect ours, we must exercise caution in our use of them. These images are not just representations of bodies, they are instances of a person’s life, and furthermore, often present facets of that life that are considered private to some extent, such as pregnancy and illness.

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Adult, male mosquitoes are inspected by an IAEA technician at the Agency’s Insect Pest Control Laboratory in Seibersdorf, Austria. Image source: Dean Calma / IAEA via Flickr.

While privacy is a central topic in bioethics, the kind of privacy at stake in this case may not fit neatly into bioethical definitions and guidelines. Forms of privacy relevant to bioethics include informational privacy, physical privacy, decisional privacy, proprietary privacy, and relational privacy (Beauchamp and Childress 2013). It is plausible to say that media representations of these mothers and children include most of these forms, but also other aspects that may fall outside of these definitions. A BBC News report on babies born with microcephaly attributed to in-utero Zika infection in Pernambuco, Brazil, not only shares private information such as details on the health and pregnancies of the featured mothers, but also allows us a very close look at their private lives; their homes, bedrooms, and even the intimate suffering caused by disease. Even if subjects have consented to the use of their likenesses and stories, is this an encroachment on privacy, and if so, one that would fall within the purview of bioethics?

In bioethics, discussions of privacy generally focus on situations involving patients or subjects in medical care or research settings. Beyond these settings, safeguards such as Institutional Review Board approval are in place for most other research done in an academic setting or for academic purposes, but the same does not apply to non-academic research, including journalistic investigation. While journalism has its own set of ethical principles and guidelines, these tend to be more flexible regarding notions of privacy; the sharing of information that might be considered private in a healthcare setting is allowed in the media under the freedom of press principles. A common protection available to subjects in both healthcare and media settings is informed consent; in both cases one of the main roles of informed consent is to protect subjects from harm, acting on the principle of respect for autonomy (Beauchamp and Childress, 2013). Considerations of autonomy and harm are central to ethical dilemmas in journalism, but they tend to be open to interpretation, arguably more so than in bioethics (Richards, 2009). Furthermore, this interpretation is influenced by where loyalties lie in each case; for healthcare practitioners and researchers, the patient or subject is the priority, while journalists have a prima facie duty to the public interest (Canadian Association of Journalists, Ethics Advisory Committee, 2014). Another issue with consent in this case is that while consent may change over time, it would be practically impossible to completely remove the availability of images and stories that have already been made public, especially with the growing use of the internet and digital communications. One can assume that even if the content is eventually removed from the digital sphere, the images and stories of these mothers and children can be downloaded, saved, and shared without limit.

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In Recife, Brazil, Minister Teresa Campello talks to residents of Recife, Brazil, as part of a Zika prevention campaign “Dia Nacional de Mobilização Zika Zero.” Image source: Ministério do Desenvolvimento Social e Combate à Fome on Flickr.

In this case, the insufficiency of consent is further complicated by the social location of people being portrayed. Although in theory privacy protections apply equally to all, privacy is a markedly gendered and raced concept. For example, since fertility and reproduction can be said to play a role in a nation’s sustainability, many governments see it as their business to legislate over women’s bodies, dictating if and how women have a right to make autonomous reproductive choices (Holloway, 2011). Notably, the majority of women portrayed by the media coverage of the Zika epidemic are poor women of color; part of the reason is simply due to the geographical location of the epidemic, as well as the fact that poor populations generally have access to less resources to prevent and treat disease. Populations whose medical care is attached to some aspect of identity, for instance age, gender, race, or ethnicity, and whose autonomy is diminished in relation to this identity are considered vulnerable (CIOMS, 2002; Holloway, 2011). In research and medical care, these individuals are subject to protections regulated at the international and national levels. While ethical guidelines in journalism also include special considerations for vulnerable subjects, definitions of vulnerability and how to manage it are often vague, and always weighed against the need to provide a public service (Richards, 2009). Usually, the only protection vulnerable subjects have access to is informed consent, which is of little use if their autonomy is already compromised. We must also consider that vulnerability goes beyond diminished autonomy due to one’s age, gender, or race; it also includes, for example, an increased exposure to social risks that can result in discrimination, loss of opportunity, and even violence. Zika-infected pregnant women portrayed by the media can find themselves under even greater public scrutiny, and may be denied access to options such as elective abortion and participation in research that could potentially help women in similar situations (Harris et al, 2016). But, this should not mean that we cannot access or share information about vulnerable subjects, it just means that as is often the case, consent is not enough, especially when this information is likely to be widely broadcasted.

Given the importance of these stories in shaping a public narrative of the Zika epidemic, and the risk of harming vulnerable subjects, bioethicists should take an active part in laying out guidelines for the sharing of this information. Some aspects to consider in these conversations are cultural assumptions about privacy, our purposes for sharing this information, and whether or not it is contextualized by a broader story—not simply a voyeuristic look into the suffering of others. Additionally, breadth of scope should generally be considered in order to assure that images and stories do not focus on one aspect of a broader problem. A more balanced coverage of the Zika epidemic should also focus on the stories of researchers, government officials, tourists, and others touched in some way by this crisis. Finally, the kinds of information outlets we are using should be of primary concern; information shared on the internet, a generally open and unregulated source, can widely expose intimate aspects of a person’s life, and cause harm beyond what we can imagine.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

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References

  • Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics. Oxford University Press, USA.
  • Canadian Association of Journalists. (February 10, 2014). On the record: Is it really informed consent without discussion of consequences? A report of the Ethics Advisory Committee of the Canadian Association of Journalists. Retrieved May 15, 2016 from: http://www.caj.ca/on-the-record-is-it-really-informed-consent-without-discussion-of-consequences/
  • Centers for Disease Control and Prevention. Zika Virus. Retrieved May 13, 2016 from:  http://www.cdc.gov/zika/geo/
  • Corbin, J. (March 7, 2016). Having a baby in the Zika capital. Retrieved May 10, 2016, from http://www.bbc.com/news/magazine-35747161
  • Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects. CIOMS. Geneva, Switzerland.
  • Harris, L. H., Silverman, N. S., & Marshall, M. F. (2016). The Paradigm of the Paradox: Women, Pregnant Women, and the Unequal Burdens of the Zika Virus Pandemic. The American Journal of Bioethics, 16(5), 1-4.
  • Holloway, K. F. (2011). Private Bodies, Public Texts: Race, gender, and a cultural bioethics. Duke University Press.
  • Rasmussen, S. A., Jamieson, D. J., Honein, M. A., & Petersen, L. R. (2016). Zika virus and birth defects—reviewing the evidence for causality. New England Journal of Medicine.
  • Richards, I., Managing the margins: how journalism reports the vulnerable, Asia Pacific Media Educator, 19, 2009, 14-22. Available at: http://ro.uow.edu.au/apme/vol1/iss19/3

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