Science for what? Science for whom?

Thais Valim

Programa de Pós-Graduação em Antropologia

Universidade Federal do Rio Grande do Norte

thaismvalim@gmail.com

As the first babies diagnosed with microcephaly developed, other clinical signs began to be observed — such as motor difficulties, some alterations in eyesight and cardiac disturbances. In this scenario, specialists began to understand this phenomenon as a syndrome, a group of symptoms that became known as SCZV — Congenital Syndrome of Zika Virus.

To better understand, analyze and classify the biomedical vicissitudes of the emerging epidemic, one of the strategies instituted by the Health Ministry was an organised effort to examine new born babies diagnosed with SCZV. Several children were subjected to tests, exams and other clinical procedures. As one of the mothers interviewed as part of our research project affirmed, ‘the doctors are still in the process of defining the syndrome.’ The bodies of those children were effectively being used as objects of study for this empirical characterization of new scientific discoveries.

Medical personnel justified such procedures in terms of a need to better understand the epidemic and to offer therapeutic options for affected babies. However, the mothers reported experiences of objectification or of de-subjectification of their children. Medical practice that should help the health of these children, in reality, captures them for investigation and transforms them into objects of study. This is the case of Luiza, who even before she was 30 days old already had been submitted to a long battery of clinical examinations. Her mother, Jacqueline, reflected on these tests and said:

They came, entered our room and ordered the removal of her clothes so she could be examined. They examined her all naked. Later, others came and looked at her again. I was there in the hospital for 13 days […] And then, finally, I was very tired, crazy to go home, to my own place. Then, in came a resident doctor, and I asked him, “Are you a resident?”. If he in fact was, I would say, “No, no, no. Only real doctors can touch her now. And that’s it. No more examination.”

The impression that they were capitalizing information by using the body of her daughter was intensified by Jaqueline’s attentive observation of other children and their mothers that she came to know. She continued:

I saw a child with microcephaly that had died. She died right there in front of us all. The staff quickly wrapped the child up in a white cloth, well wrapped up. Then they obliged the mother to sign a form and they took the child’s body away for research. The mother did not even have the chance to mourn and bury her own child, or anything like that.

Many mothers and families reported similar occurrences and treatment. In spite of the abuses identified, the majority of families continued with the clinical examinations because they believed that this was being done in order to increase the chances of survival and their child’s quality of life. An important part of the parent’s decision was the fact that some therapies of early stimulation (such as physiotherapy, occupational therapy, audiotherapy) were highly prized, and were offered in exchange for the participation of these children in the research and clinical tests.

These exams were necessary: the syndrome is new and even today there is much more to be discovered. In theory, the urgency to better understand the syndrome was the driving force of the idea that the new discoveries would eventually improve the lives of these children. Research should produce results and outcomings in the name of the wellbeing of these children and their families. Yet another layer of clinical malpractice was revealed: after all the procedures, some of which quite uncomfortable and invasive for the children, many mothers reported that they never received any of the results from these exams. Jaqueline herself told our research team that she only came to know the result of the blood test that had determined the connection between Zika virus and her daughter’s microcephaly condition six months after the blood had been collected. Even then, the doctors never gave her the results printed in paper, and formally authenticated and signed. They simply communicated the results orally to her, “mouth results,” as she called it. Without written evidence, numbers, signatures and official stamps, the route to access the health and bureaucratic services would become even more difficult for these women and their babies.

If so much effort was dedicated in the direction of better characterization of an epidemic and a virus to improve the treatment of these children, why were the results not widely shared and disseminated with these families? Where have these new discoveries gone beyond the publication in international science journals? For whom, then, is science being made to benefit?

Publicado originalmente no Blog do Centre for Cultures of Reproduction, Technologies and Health, da Universidade de Sussex/Inglaterra, em Março de 2018 http://www.sussex.ac.uk/corth/publications/blog/2018-03-13