CORTH Blog: 28 February 2019

Soraya Fleischer
Anthropology Department, University of Brasília

It’s Saturday morning. In a private university in the Brazilian metropolis of Recife, there is an open patio where students and staff scurry around quickly. There are plastic pieces of furniture in a corner, with paperwork, tourniquets, gauze and syringes on the tables. A doctor and a nurse sit on the chairs without white coats, handling these laboratory instruments. Opposite them are young mother and her daughter. The mother, before allowing her two-year-old daughter's vein to be punctured, is quick to ask, "But this research will produce results, right?" The doctor reassures her, "Of course it will, of course it will, Mama”. Consent was given by her, blood is collected by him. Another step in one of the dozens of clinical research on the Zika virus takes place in the capital of Pernambuco, Brazil.

This is not the scenario we envisage for clinical research. Generally, we imagine a person lying on a hospital bed to have some substance removed from the body or a person going to a clinic to receive the dose of an experimental drug. The Zika virus epidemic has created an atmosphere of emergency, any place can offer an opportunity for conducting research.

More than that, the idea of ​​"research" quickly and forcefully won the hearts of the "micro moms," as the mothers of children born with the Zika syndrome have decided to call themselves. It is not uncommon to find them willing to offer biological material for studies on the virus research. We saw mothers and their children going to offices, universities, public squares, schools, health posts, non-governmental organizations, and even shopping malls to have blood, saliva, nail, urine or hair collected by different scientists.

At this point many readers may be thinking: ‘But how irresponsible to expose their children – so small and without power to decide for themselves – to so many needles, catheters and band-aids! How greedy to put their own will ahead of the offspring in order to gain prestige, gifts and benefits in exchange for human blood samples! Vampires!’

It is worth, however, to consider other aspects that seem important and that reveal much about the scientific culture that has been created around the Zika virus epidemic in the Recife region. We speak from our experience of research in the area of ​​Anthropology, working close to these women since 2016.

First, these women quickly understood that so-called "research" is an opportunity for them to access health services for their children. They offered drops or milliliters of blood, but they also received consultations, medical opinions, free samples of medications, diapers and powder milk. These are items that truly benefit these children, usually from poor families. Research also takes place within rehabilitation clinics, allowing them to gain access to the therapies offered there. A researcher may also be a doctor in a hospital and, when participating in the research, the mother becomes known, she gains the sympathy of this health professional,  and more easily enters the queue or gains access to a next visit.

Second, through participation in research, the scientists promise to return "results". Many of these women look forward to receiving them. They believe they will get back a hemogram (CBC) that will indicate the relationship between the Zika virus and the symptoms. This exam can help as a referral to another and more specialized health service. But many of these researchers are speaking another language, are thinking of another type of "science." They hope their findings about the virus can be published as an article in a prestigious academic journal, possibly overseas, giving them reputation, new funding and career advantages. Or they may be thinking of healing the Zika epidemic by producing an effective drug. But we know how long the interval can be between the sample withdrawal and the box of pills available on the pharmacy shelf. Therefore, different definitions of "science" are circulating, different expectations are being communicated by researchers and being understood by micro moms.

Third, these women know that participating in a survey will give them more chances to participate in a further  survey. Their names are in registers and databases, they can receive phone calls and are invited to take the child to another clinical appointment where biological material is extracted. They do not want to be far from what they understand as opportunities for their children, they do not want to get out of the circle of contacts and news about the virus that, as time goes by, continues to  unravel. They are concerned about their children's congenital syndrome. They know very well that it is  the language of the "Zika virus" that they need to draw upon to navigate. Zika, virus, syndrome – these are all terms that open doors.

Fourth, we have noticed that to be part of new research, micro moms demand to be presented with the results of previous investigations. Although these women have already participated in dozens of surveys, they never - ever! - received any  feedback. Maybe a "result by mouth", as they say, when referring to an information spoken out quickly by a doctor, for example. But there are no papers, photocopies, prints, reports. Nothing has been received by mail, by telephone message or in hand, as so many researchers promised when inviting the Moms and children to be part of the research, as appeared in print in the terms of consent signed by both parties - researchers and mothers.

Thus, mothers and children are available to science that is  produced about the Zika virus in Brazil, by local and foreign scientists. But they do not receive returns from this science. They are  abandoned, instrumentalized and silenced in  the long chain of scientific production. More than that, a penalized party: the researchers raise expectations, generate frustrations and, moreover, produce onus. Many times, a specific result is the condition for a micro child to participate in a new research, a specific rehab therapy or join a trial group but, without the exams in hand, they will not be benefited by any of this. So this science seems not only instrumental, but exploitative. Onus and no bonus is at stake here.

Perhaps, by now, readers have already glimpsed that vampires may be another party. This reaches even higher levels of exclusion if we remember that in Brazil, much of the state-of-the-art research is financed with taxpayers' money. Or if we think that the results of many of these researches will only be available to those who can afford to pay for expensive access, of international scientific journals, written in a foreign language. Or if we think that the drugs and technologies that may result from it all will only be included in the country's private hospitals and pharmacies at a high cost. Finally, we join the chorus of the Mama at the start of this story: "So, after all, will this research produce any results?"

Based on ethnographic data from the research project: "Zika and microcephaly: An anthropological study on the impacts of diagnoses and prognoses of fetal malformations in the daily lives of women and their families in the state of Pernambuco". We thank our funders, FINATEC and PROIC from the University of Brasília and CNPq and CAPES. For further information visit: https://microhistorias.wixsite.com/microhistorias

Soraya Fleischer’s CORTH visit was supported by the Newton Institutional Links Grant and funding from the Brazilian National Research Council, Higher Education Training Fund and the Science and Technology Department at the Ministry of Health.