André Costa (Agência Fiocruz de Notícias)
What is the situation of the families of children affected by zika virus more than two years after the epidemic in Brazil? What social dimensions of the disease were ignored, and how to remove them from invisibility? How is discussion about the virus inseparable from a debate on women's reproductive rights and abortion, for example? What should be an ethical approach for research subjects with such a sensitive subject matter?
These and other issues were on the agenda on April 26 and 27 at Fiocruz, at the workshop: Global Health: the zika outbreak and the international intersections. Organized by Zika Social Science Network, which brings together national and international researchers and institutions, the event had a nature of work meeting, with the explicit purpose of not only presenting completed studies about the outbreak, but also advancing knowledge of the disease through the exchange of perspectives and analyzes. The meeting was promoted by Fiocruz, along with the British Council, the Brazil-UK Year of Science and Innovation, the Newton Fund and the Zikalliance network.
At the opening of the event, president of Fiocruz, Nísia Trindade Lima, stressed that the cooperation between Brazil and the United Kingdom in scientific research is "extremely profitable". Lima, who is a sociologist, said that the "outbreak of zika is completely permeated with social issues, which is expressed, for example, in the themes of the social determinants of health, women's reproductive rights and women's leadership in social movements that have emerged to create networks of support to those affected". She also highlighted "immediate response" of Fiocruz to the epidemic, which was expressed both in its leading role in research and in its surveillance and production initiatives.
After Trindade Lima, it was the turn of the British Consul in Brazil, Simon Wood, to declare his opinions. He emphasized the crucial importance of scientists in public health emergencies, since "politicians are particularly bad at responding to these situations. In these scenarios, it is necessary not only to have a deep scientific knowledge, but to be able to articulate it effectively. Politicians can often panic and propose responses that are not based in scientific evidence." Wood also expressed high expectations regarding the Brazil-UK Year of Science and Innovation, which aims at "promoting and expanding scientific research in key areas such as health and biological sciences", noting that the workshop fit perfectly into the type of initiative sought.
Gustavo Matta, a researcher at the National School of Public Health (Ensp/Fiocruz), who coordinated the meeting, said that "there are still a lot of uncertainties related to zika. The purpose of this meeting was to share experiences and information among scholars from different areas of knowledge to understand what lessons were learned, which areas deserve more attention and how international cooperation can act in order to cope with such epidemic”.
“The epidemic is not over”
Live presentations and teleconferencing took place over the two days, always followed by heated debates and analysis. Emphasis has always been not so much on its biological impact, but rather on wider impacts on families and communities. The complex effects of zika in its social dimension change over time, creating different situations and demanding equally unprecedented responses. As researcher Hanna Kuper of the International Centre for Evidence in Disability, in the United Kingdom, summarized "for Fiocruz and research groups working on social and humanitarian issues, the epidemic is not over. There are a number of issues that need to be addressed”.
Like other researchers, Kuper's project aims at understanding and assisting the impacts of zika on families - on mothers in the first place, but also on other adults in charge such as fathers and grandparents. This means paying attention to people who often come from poor contexts, of precariousness and social abandonment, and who suddenly find themselves faced with new economic and structural problems. According to Kuper, these problems include, for example, people who need to stop working because they need to take care of the children, or they find it difficult to have in the Unified Health System all services for the development of their children such as physiotherapy and other activities.
These new challenges have worsened already quite complex scenarios, noted Maria Elizabeth Moreira, coordinator of the Clinical Research Unit of the National Institute of Women, Children and Adolescents Health Fernandes Figueira (IFF/Fiocruz). Moreira said that the violence in Rio de Janeiro has hampered the participation of mothers of affected babies in sheltering activities at the institute where she works. According to her, mothers often must remain locked at home due to violence.
These aspects can be included in what historian of science Ilana Lowy, director of the Cermes3 research center at Paris-Descartes University, has defined as invisible aspects of the disease. Lowy compared the situation of zika epidemic to what has already happened to yellow fever in the first half of the 20th century in Brazil: while large narratives are constructed by the media and other agents, there are dimensions that are left in an area of shade, being disregarded by public policies, research and the imaginary built on the phenomenon. According to Lowy, a contribution of social sciences to these zones of invisibility may even help to clarify enigmas also related to biological sciences such as the high percentage of cases of malformation in a relatively restricted geographic area in Brazilian Northeast and the percentage of the population that has already been infected with the virus - and is believed to be permanently immune.
Abortion in discussion
Marília Sá Carvalho, a researcher at the National School of Public Health, introduced one of the most controversial points of the workshop, which is also related to issues that are invisible in the debate, and, in her own words, is "central": abortion. According to Sá Carvalho, "it is necessary to know if there was a decrease in the number of births caused by zika. Did the women postpone pregnancy? Aborted? This is a pressing theme, which has been ignored in Brazil, while advancing in neighboring countries such as Argentina”.
Camila Pimentel, a sociologist at Fiocruz Pernambuco, noted that the debate over abortion and zika is quite delicate. "There are people who understand that relating zika and abortion would reinforce prejudices - some people even talk about eugenics. Care is needed when talking about the topic, so it does not look like it is a prescription".
President of Fiocruz, Nísia Trindade Lima, said that exactly "because it is a family choice and not a state policy, it is not appropriate to talk about eugenics. This term confuses more than clarifies the problematic. The topic of abortion can by no means be put as a prescription, but rather as a choice." Lima added that, from the point of view of qualitative research, in studies on pregnancy interruption a fundamental factor to be considered is religion, understanding how the discourse of Catholics, evangelicals and adherents of other beliefs interfere in the debate.
The methodological difficulties of addressing the topic were highlighted. The illegality in Brazil makes it difficult or impossible to know how many abortions were made, if they increased, who those people are and where they are. In this regard, Maria Elizabeth Moreira stated that "if there was an increase in the number of abortions, it is clear that these women will not appear." Alternative approaches were offered, such as analyzing the number of cases of women who had complications and were treated in SUS.
Another option was suggested by Fábio Gouveia, a researcher at the Museum of Life of the Oswaldo Cruz House (COC/Fiocruz) and the Graduate Program in Information Science at UFRJ: the use of big data. According to Gouveia, "it would be interesting to look at, for example, the search curve for abortion on Google. Has there been an increase in searches for medication? Since data on the internet is not synonymous with reality, this is yet another tool to be incorporated”.
Ethics in research
Another research presented at the workshop was that of Denise Pimenta, from Fiocruz Minas, and João Nunes, from the international relations department of the University of York in the United Kingdom. They have studied the zika phenomenon "in terms of policies at the level of global health governance”, as Nunes expressed. From this, they heard three voices they considered neglected: feminist and women's social movements, particularly in rural areas; associations of mothers of children with microcephaly; and community health agents.
The research led them to Germana Soares, president of União Mães de Anjo, an association that assists families of children affected by zika. In a testimony recorded for the researchers and reproduced at the workshop, Soares is severely critical of researchers who "took advantage of the fragility of families in an attempt to find out what the children had, without offering anything in return, not even the result of the research. They are people who have become known, earned money and gained prominence by becoming a reference but never bothered to tell the consequences of collecting the material”.
Soares said he is "aware that research is important, but respect is needed. There are researchers who say they will spend 30 minutes and stay the whole afternoon, others try to deceive families, treat them as objects and not as humans. As everyone progresses in research and our assistance remains as precarious as ever, we are currently not interested in receiving researchers. We have a small group, and many mothers today refuse to talk to scholars”.
Commenting on the message left by Soares, Gustavo Matta proposed conducting "workshops with the mothers on what it means to be a participant in a research. What are their rights, how to deal with harassment, what should be expected from there on?”
In the course of the meeting, it was agreed that the magazine Reports in Public Health, of the National School of Public Health, will have an edition dedicated to the social dimension of zika. Its focus of interest should include issues addressed at the workshop, such as sexual and reproductive rights, masculinities and zika, tension between community approach and individual accountability, among others.