On irresponsibility in times of crisis: learning from the response to the Zika virus outbreak

ABSTRACT

This perspective paper offers some first thoughts regarding the current Zika virus outbreak and the immediate response it generated in health and research policy. We suggest that in times of emergent health crises, irresponsibilities may arise in the way responses which involve science and technology are framed and implemented. These pertain both to how such situations emerge under a crisis frame, and to pre-existing irresponsibilities which condition how such crises unfold. Reflecting on these irresponsibilities helps to clarify both how crucial it is to promote responsibility in research and innovation in everyday situations, and how important it is to maintain vigilance in times of crisis. We argue that care for the future needs to incorporate attention to persisting inequalities, which become especially salient in moments of emergency and which condition how crises are dealt with and the role innovation is perceived to play in their solution.

KEYWORDS:

• Zika virus
• responsible research and innovation
• public health ethics
• research policy

Zika and emerging irresponsibilities

This perspective paper offers some first thoughts regarding the current Zika virus outbreak (first in Brazil, now more widespread) and the immediate response it generated in health and research policy. We suggest that in times of emergent health crises, irresponsibilities may arise in the way in which responses involving science and technology are framed and implemented. These pertain both to how such situations emerge under a crisis frame, and to pre-existing irresponsibilities which condition how such crises unfold. Reflecting on these irresponsibilities helps to clarify both how crucial it is to promote responsibility in research and innovation in everyday situations, and how important it is to maintain vigilance in times of crisis, when a frame of emergency may also be associated with irresponsibility regarding the use of controversial technologies. We argue that care for the future needs to incorporate attention to persisting inequalities, which become especially salient in moments of emergency and which condition how crises are dealt with and the role innovation is perceived to play in their solution.

Irresponsibility here refers to forms of crisis governance implemented in times of emergency which do not fully engage with the public in ways which may be considered participatory or reflexive. One example in the Zika case was the absence of discussion regarding poverty and women’s reproductive rights as solutions such as abortion were proposed, even though such proposals affected mostly poor women in areas which lack infrastructure and access to health services (Baum et al. 2016; de Campos 2016). These proposals were prioritized over research on vaccines at the early stages (de Campos 2016), necessitating reflection on how such proposed solutions could be labelled irresponsible, given that they ignore such structural issues pertaining to science and society.

By irresponsibility we also mean a lack of care for the future (i.e. implementation of rushed and potentially catastrophic solutions without heeding problems perceived as urgent), and a lack of reflexiveness about said solutions, wherein the frame of ‘emergency’ itself is not debated (as a case in point: is Zika best solved using modified mosquitoes or by having improved access to sewage and health care?). Our lack of previous knowledge, in cases like these, may lead to an uncritical belief in the application of new technologies, without a fully thought out strategy to cope with the multi-faceted aspects of the outbreak (Wallace and Rafols 2016). Paying attention to issues such as neglected disease research here comes to the fore as an aspect of ‘care for the future’ as much as planning future research and innovation to solve a crisis.

Understanding how pre-existing social and scientific inequalities shape such a crisis is crucial, we argue, for reflection on the role that science and technology are seen to have in solving emergent crises, the dangers of adopting technology fixes irresponsibly and the need to question the belief that new technologies can provide a quick solution to every crisis. As the case of Zika helps to illustrate, debates on the adoption of controversial technologies in times of health crisis may distract from the need to understand how pre-existing unequal social relationships and the broader socio-political context are key to understanding both the dynamics of the outbreak and the possible solutions, or failures to respond adequately (AP 2016).¹

Responding to the crisis: the role of technology

An outbreak such as the current Zika virus can start locally and quickly become global, thus the responses to these situations can have both local and potentially global, longer term effects. The speed at which a crisis develops and controversial solutions are put on the table begs the question as to how such crises are governed, and how we can best proceed in the quest for longer term, more sustainable solutions during times of emergency. For example, releasing genetically modified mosquitoes in Brazil can have effects on local populations and ecosystems that are highly uncertain. This makes the need for thinking through care for the future much more complex and yet so much more necessary, as both research and health systems become ever more globally interrelated.

Governments, agencies and scientists have scrambled to understand the current outbreak ever since it started in 2015. The level of attention garnered in this particular outbreak is high as scientists in Brazil and elsewhere have reported on possible associations of the virus with microcephaly in foetuses and with neurological diseases such as Guillain-Barre syndrome in adults (WHO 2016).² Compared to other similar outbreaks involving health, such as Ebola (BBC 2016; Härtl and Jašarević 2016)³ or dengue fever (BBC 2015),⁴ the Zika case has been framed as urgent, with an emphasis on the high stakes of inaction: in Brazil, politicians and doctors discuss a generation of microcephalic patients who will need constant and long-term care (Formenti 2015).⁵

The link between Zika and microcephaly (Firger 2016; Mlakar et al. 2016)⁶ became at the same time the most visible aspect of the terrible effects of the outbreak, spurring panic in Brazil and worldwide (Bowater 2016),⁷ and the main reason for unorthodox actions to be proposed. In the midst of acute uncertainty, many unorthodox solutions were put forward, most notably the use of technology to reduce Aedes aegypti mosquito populations – including the release of genetically modified strains (Pollack 2016),⁸ the use of radiation to sterilize mosquitoes (Boadle 2016),⁹ and the recommendation that women be able to abort in countries affected by a Zika outbreak (Watts 2016a).¹⁰ Scientists even suggested postponing the 2016 Summer Olympic Games due to fears concerning the outbreak (Caplan 2016).¹¹

Another aspect of the public debate (in bioethics literature as well as in the media) was the focus on poverty, inequality and women’s rights, themes not directly related to science and technology but which help contextualize the disputes around social issues made explicit by the outbreak. Experts denounced the lack of access to safe abortions and the threat of violence towards women in affected areas (Watts 2016b),¹² as well as the dire poverty that afflicts women in areas where the epidemic hit the hardest (Brum 2016).¹³ Critics also questioned the focus on making individual women responsible as opposed to framing the discussion around reducing inequality or promoting better access to reproductive planning, urban infrastructure (Brooks 2016)¹⁴ or safe abortions (Yamin n.d.).¹⁵

The emergent characteristic of Zika is important to this reflection (NCo 2012) and deserves more careful consideration: seen as an emergency and understood through the lens of haste, it seems almost inevitably to require an urgent and rapid response (Wallace and Rafols 2016); as an extraordinary circumstance, it is perceived to require extraordinary solutions. It is also an emerging crisis: it is laden with extreme uncertainties; it is fast developing in ways that are poorly understood, with the science about the virus emerging as the crisis itself develops. Solutions are being proposed and revised in the heat of an ongoing process.

Governing the Zika crisis

A crucial feature to draw attention to as regards emergent irresponsibility is precisely the framing of the problem itself. This pertains here to how Zika has been framed as an urgent crisis demanding quick and effective solutions. This framing of a ‘crisis’ is related to the debate on health and reproduction, as described above, and helps legitimize the use of controversial technologies. The perspective of RRI help us to understand how, in this case, the frame of crisis itself is a political issue, since it potentially makes highly uncertain technological solutions seem more urgent than the need to deal with long-standing inequalities. Adopting new technologies in the absence of reflexivity or public participation would be, in that sense, very irresponsible; indeed RRI scholars have made this point in other cases, as with the attempt to govern geoengineering (Macnaghten and Owen 2011). What may be missing from RRI in general is the means to theorize as to how these blind spots can be better illuminated by bringing into the discussion of science and technology those issues pertaining to social justice, and structural inequalities, which condition how decisions are made and the kinds of decisions that end up on the discussion table (and those which never make it there).

Related to this framing of Zika as an emergency, and because of the perceived need to find solutions through science, collaborations between countries were established¹⁶ and increased funds for research on the disease were made quickly available in places like Brazil.¹⁷ However, debates on social inequalities in the context of this global scientific agenda have been largely non-existent. Choices regarding what to study are political and value-laden, and the ways in which research is governed in emerging countries like Brazil and how this relates to global science are still lacking in RRI debates, with notable exceptions (Macnaghten et al. 2014).

Again, the choice of investing more money in technological solutions vis a vis discussing social inequalities related to disease is related to values concerning science and policy, and RRI has real potential to advance a discussion on this in terms of actual policies for health research worldwide (Jacob et al. 2013). RRI needs, then, to include a geopolitical element in its discourse, in the sense that it needs to rethink global inequalities in research and the ways in which they relate to global agendas in science and in health policy.¹⁸

We suggest that, in addressing Zika and other ‘outbreaks’, we should address the complex interplay of social, cultural and scientific aspects of such emergency situations, including questions of power/knowledge and inequality that are central to how the crisis develops and to possible prevention and mitigation efforts. Notwithstanding the need for expediency in emergency situations, panic and fear have shown to be crucial in understanding previous outbreaks and how they are governed irresponsibly, as in the case of AIDS and stigma faced by gay men (Shilts 2007), which also affected research and public participation (Epstein 1996). Health research and policy are thus never outside of such disputes involving (as in the case of Zika and AIDS) gender, reproduction and social inequalities. Thus, and given the high stakes of irresponsibility itself, such moments need RRI even more than business-as-usual situations.

The role of RRI in crisis situations

Frameworks for responsible innovation (Stilgoe, Owen, and Macnaghten 2013) point to central questions that need to be addressed in order to better operationalise responsibilities in crisis situations. We discuss three of these briefly below in the specific context of the Zika crisis:

• Inclusion: public engagement can help promote greater public trust in public health measures which may be intrusive, as, for example, certain efforts to destroy mosquito breeding sites. This became a real issue in Brazil, where the army had to be mobilised to facilitate health workers going into homes to check for mosquitoes (Watts 2016c);¹⁹ ideally, public engagement can provide opportunities to deliberate on what is actually at stake in an effort to open up the framing of problems and solutions.

• Transparency: transparency here involves an attentiveness by both public and elite actors as to the processes through which decisions are made opaque in a crisis, and to reflexively understand how defining situations as crises are framing moves to be reflected upon: why and how is this a ‘crisis situation’ in the first place, and who gets to decide?

• Social justice: Does framing a policy problem as a crisis potentially exacerbate long-standing social justice considerations such as inequality? What constitutes ‘responsible’ research and innovation under such circumstances? Unpacking inequality both in policy and in research contexts can draw attention to social justice issues, such as the dearth of neglected diseases research.

The latter consideration underscores that this set of points does not pertain only to addressing the Zika crisis but also to reflecting more generally on how reframing such crises and developments can be included in RRI frameworks and practices. For instance, problem reframing could involve giving attention to unattended fields – such as neglected and rare diseases and development policies – as intellectual challenges worthy of being taken up by researchers and businesses (van den Hoven et al. 2013). Tackling such ‘orphan’ areas would necessarily involve addressing social injustices and inequities (van den Hoven et al. 2013).

We hope to have highlighted an overlooked source of irresponsibility in research and innovation through our brief analysis of the response to the Zika outbreak, showing the need to care for the future in producing and engaging with science and technology. The framing of Zika as an emergency, while it helped mobilise relevant resources for prevention, for research and important international cooperation, has also opened up important ‘windows of irresponsibility’ which should be debated. Such irresponsibilities involve promoting quick technological fixes to problems which are linked with long-standing inequalities, in ways that are neither reflexive nor participatory.

An excessive reliance on technology as the primary source for responses to crises such as Zika can obscure other debates on how to deliberate and act in such emergencies, which include promoting enhanced access to public services and mitigating extreme inequalities before crisis hits. It can also engender opaque governance and alienate those most affected by the crisis, such as women and children. For these reasons, more responsible ways of engaging science and technology are crucial, especially during a crisis. And a focus on social justice issues, which are sometimes seen as separate from technology-based responses to political problems, can offer means of coping that are less focused on unreflective solutions to current situations and more concerned with sustainable and inclusive futures.

Notes on contributors

Marko Monteiro is an anthropologist with a PhD in Social Sciences (2005), currently an Assistant Professor of STS at the Science and Technology Policy Department (UNICAMP – Brazil). He coordinates the Interdisciplinary Research Group in Science and Technology (GEICT) since 2011, and has published works related to interdisciplinary work in science and the development of remote sensing knowledge in Brazil.

Clare Shelley-Egan is a senior researcher at the Research Group on Responsible Innovation, Oslo, and Akershus University College of Applied Sciences. Her research interests include ethics and governance of new and emerging science and technologies. She is currently project leader on the Naturalness in Human Cognitive Enhancement (HCENAT) project, a project funded by Norway Grants.

Jim Dratwa's research and publications address the interconnections between knowledge, values and action. He heads the team tasked with Ethics in Science and New Technologies at the European Commission, he is the Secretary-General of the EC International Dialogue on Bioethics and Global Fellow of the Woodrow Wilson Center, Washington, DC.

ORCID

Marko Monteiro http://orcid.org/0000-0003-4008-4985

Additional information

Funding

This work was supported by National Science Foundation [grant number 1257246].

Notes

1. http://www.cbsnews.com/news/brazil-zika-outbreak-too-much-for-government-health-to-handle/

2. http://www.who.int/mediacentre/factsheets/zika/en/

3. http://www.bbc.com/news/world-africa-28755033, http://www.who.int/mediacentre/news/releases/2016/ebola-zero-liberia/en/

4. http://www.bbc.com/news/world-latin-america-32589268

5. http://exame.abril.com.br/brasil/noticias/microcefalia-trara-geracao-de-sequelados-diz-medica

6. http://www.newsweek.com/new-evidence-supports-zika-microcephaly-connection-428736

7. http://www.telegraph.co.uk/news/worldnews/centralamericaandthecaribbean/12116589/Birth-defects-in-Latin-America-spark-Zika-virus-panic.html

8. http://www.nytimes.com/2016/03/12/business/test-of-zika-fighting-genetically-altered-mosquitoes-gets-tentative-fda-approval.html

9. http://www.reuters.com/article/us-health-zika-radiation-idUSKCN0VV2JK

10. http://www.theguardian.com/world/2016/feb/05/zika-virus-epidemic-abortion-birth-control-access-latin-america-united-nations

11. http://www.forbes.com/sites/arthurcaplan/2016/06/10/scientists-say-the-rio-olympics-should-be-postponed-due-to-zika/#23d833634b45

12. https://www.theguardian.com/world/2016/mar/07/zika-epidemic-reproductive-rights-women-latin-america-amnesty-international

13. https://www.nytimes.com/2016/02/08/opinion/the-zika-virus-and-brazilian-womens-right-to-choose.html?_r=0

14. http://www.reuters.com/article/us-health-zika-inequality-insight-idUSKCN0WH0EH

15. https://fxb.harvard.edu/4941-2/

16. One example is the Cura Zika Project, led by the University of Pittsburgh: https://www.publichealth.pitt.edu/curazika?_rdr.

17. Brazil's FAPESP has made generous funds available, setting up a research network: Rede Zika (http://agencia.fapesp.br/rede_zika_elenca_prioridades_e_define_estrategias_de_operacao/22706/).

18. The European Commission funded Progress (PROmoting Global REsponsible Research and Social and Scientific innovation) project, for example, aimed to link existing international networks of RRI with relevant societal actors on a global scale to focus innovation on societal desirability.

19. https://www.theguardian.com/world/2016/mar/30/brazil-zika-war-virus-military-operation