They volunteered for scientific research, but they got no answers.

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The Zika Virus, Transmitted to Humans by the Mosquito Aedes aegypti, was introduced in Brazil in 2014. At the time, the impacts caused by the infection were still little known by the medical and scientific communities.

In October 2015, physician Adriana Melo, from the public maternity hospital in Campina Grande, Paraíba, identified an increase in the number of children born with microcephaly.

To clarify the reasons for the malformations, the specialist sent for analysis at the Flavivirus Laboratory of the Oswaldo Cruz Institute (IOC/Fiocruz), in Rio de Janeiro, samples of the amniotic fluid of two pregnant women whose fetuses were diagnosed with microcephaly during prenatal care .

The analysis carried out by Fiocruz revealed the presence of genetic material from the Zika virus in the samples. At that time, a major investigation began by Brazilian and foreign scientists into the association between the virus and fetal malformation.

With advances in studies, scientists have discovered that the virus is able to cross the placenta and harm developing children, leading to a condition called Congenital Zika Syndrome.

To reach this knowledge, however, in addition to scientists, the collaboration of countless mothers and children affected by the disease was necessary. Among them are publicist Rochelle Alves dos Santos, 32, from Goiânia, and little Hickelly, 5.

Rochelle had a daughter in 2016, during the Zika epidemic in Brazil. She says that as soon as her daughter was diagnosed with microcephaly, she was invited to participate in several scientific studies as a volunteer.

“I remember that in the beginning everything was very new, very complicated, so we accepted to participate in the surveys in the illusion and expectation of having an answer. I think that was the main objective of all mothers, to have an answer to this new syndrome and how our children would be in the future”, she says.

Today, Rochelle heads the Association of Microcephaly and other malformations caused by Zika Virus (AMIZ Goiás), which offers assistance to families affected by the syndrome. According to her, the creation of the space, which brings together people from all over the country, aimed to bring together individuals with similar experiences, encourage the exchange of experiences and expand support for children with the syndrome.

The publicist says that, in most cases, she did not receive feedback from scientists on the results of the studies in which she participated, and that similar reports are shared by several other mothers.

“When we talk about research, most mothers say they are tired of being guinea pigs. It seems that our children are laboratory mice and they are just there to be studied”, he says. “I understand that science in itself is necessary thinking about the future and the collective, but since it is a new syndrome and this difficulty in providing information that we had and still have on the subject, I think that this feedback lacked a little humanity”, he added .

From the first months of life, Rochelle’s daughter had to undergo physical therapy sessions, with the aim of improving motor coordination and movements. For Rochelle, the service, which was part of a scientific study, was one of the most positive experiences as a volunteer.

“My daughter’s physiotherapist defended her master’s degree revolving around the experience of mothers and children with the syndrome. She followed and performed the treatment with the children, in a qualitative research. Hickelly and I were fortunate to go to her presentation, we were honored and it was very beautiful and very important to me”, she highlights.

Psychomotrician Amanda Mota da Silva, 39, had Zika at 13 weeks of gestation. In morphological ultrasound, an image exam that allows observing the baby inside the uterus, microcephaly and signs of cerebral calcification were pointed out in little Alice, who was still developing.

Amanda says that, since the birth of her daughter, they have been volunteers for different surveys. Today, at age five, Alice is facing one of the most severe cases of Congenital Zika Syndrome.

“My daughter has one of the worst conditions in Rio de Janeiro, according to the Instituto do Cérebro and Rede Sarah, with an epilepsy that we cannot control. She has already used 14 different anticonvulsants, nowadays she uses cannabis to reduce epilepsy, but remains convulsing daily”, she says.

Regarding the return to studies, the psychomotrician says that she felt a lack of more detailed explanations of the findings and that she did not have access to the results of the tests performed.

“We don’t have the feedback of most surveys. We even once received a booklet with the link to the published scientific article, but those who had the opportunity to access the article saw that it was in another language. We really didn’t have access to the results of what they were doing with our children’s exams”, he says.

According to Amanda, participating in a research group at the Oswaldo Cruz Foundation (Fiocruz) was one of the few moments in which she felt comfortable talking about the subject with specialists.

“I was part of Fiocruz’s 120-year project, which featured a virtual exhibition about Zika. When a person participates in certain projects there, they have feedback and that return”, he said. She says that, in this project, she contributed to the development of booklets and informational materials on the subject from her own experience.

“They were concerned about whether the content was good, easy to access, whether it was possible to understand the language. They wanted to bring it to the audience that was really targeted by it. Scientific articles, when we manage to access and even translate from another language, we cannot understand”, he says.

What do the guidelines of the National Health Council say about devolution of studies

In Brazil, conducting scientific research with the participation of human beings depends on the approval of the Research Ethics Committees (CEPs) and, ultimately, the National Research Ethics Commission (Conep), which is directly linked to the National Council of Health (CNS).

Resolution 466/2012 of the CNS deals with the guidelines and regulatory standards for research involving human beings in the country. The third paragraph, which addresses ethical issues involving the research, brings together guidelines that include the return due to study participants.

“Assure research participants of the benefits resulting from the project, whether in terms of social return, access to procedures, products or research agents”, says the resolution.

The text emphasizes that research ethics must always seek the prevalence of expected benefits over risks. In addition, researchers must ensure the well-being of the participants and that community surveys, whenever possible, are translated into benefits upon completion.

“When, in the interest of the community, there is a real benefit in encouraging or encouraging changes in customs or behavior, the research protocol should include, whenever possible, provisions to communicate this benefit to people and/or communities”, says the text.

The resolution also highlights the need to assure research participants the conditions for follow-up, treatment, comprehensive care and guidance, as appropriate, while necessary, including in disease screening research.

“There is a need for the Terms of Free and Informed Consent to make it very clear what are the risks involved in participating in that research, what are the ways to minimize the risks, but it is also essential to think about the benefits to the research participant”, he says Professor Diego Freitas Rodrigues, coordinator of the Graduate Program in Society, Technologies and Public Policies at the Tiradentes University Center (Unit), in Maceió (AL).

According to the researcher, who has already acted as coordinator of the Research Ethics Committee (CEP), the benefits of research should prioritize the participants involved and not necessarily the authors of the studies.

“When the researcher or researcher does not provide this feedback, this return, they are violating one of the ethical principles that regulate the performance of scientific research in the country. There is regulation about it”, he says.

Respect for research participants

The researcher Heloisa Pait, a professor at the Universidade Estadual Paulista (Unesp), considers it essential to recognize the capacity of Brazilian science to carry out research of great importance for the population and with respect to research participants.

“In the consent, the research objectives are explained in an accessible way, the possible risks and benefits must be clear, as well as the information that the person can leave the research whenever they want”, he says.

In general, research results are published in scientific journals or books. For the researcher, this is also a form of return to society for the investment made in science.

“As for dissemination, most research is published in academic journals, to which there is relatively free access. There are researchers who use more accessible language, others who use more technical language; there are researchers who invest more time with scientific dissemination, others who invest less time. It’s a matter of personal choice, but the scientist’s commitment is to do relevant science with respect to the participants”, said Heloisa.

Dissemination and scientific training

Scientific dissemination is one of the strategies to popularize research knowledge in the most diverse areas, through the transformation of technical content, produced in specific languages, into materials accessible to the general public.

For Rodrigues, from Unit, the understanding of the importance of scientific dissemination by researchers is still a recent movement that collides with the dissociation between research and extension.

“Scientific dissemination would come in as an extension, in a new language. The language of an article translated into a language that can be disseminated. The priority scale has started to change very recently”, said Rodrigues.

The professor at Unesp, Heloisa Pait, defends that science be incorporated in a more intensified way into the syllabus of basic to higher education, helping to build a more familiar audience with the area.

“The dissemination of science is the responsibility of the press, scientists dedicated to dissemination and specialized publications, such as Revista Pesquisa Fapesp and Revista Unesp Ciência. My assessment is that the dissemination of science in Brazil is done well by these institutions and in the pandemic it was done in an exceptional way, with enormous dedication from the scientists”, highlights Heloisa.

For the Unit professor, there are gaps in the training of scientists with regard to scientific dissemination strategies.

“Our scientific education was aimed only at our peers, that is, writing a good scientific article, seeing if the scientific journal has a good impact factor, publishing it and seeing if it receives an invitation to publish a book”, he says.

“From the point of view of feedback to civil society, and especially those participants who are your sample, who were involved in the research, there is no priority”, he concludes.

Reference: CNN Brasil

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