Team:Amazonas-Brazil/Public Engagement
THE CHALLENGE OF CONNECTING SCIENCE AND SOCIETY
Although science and technology have been motivated for years by the desire to solve social problems, as a team we realize that the dialogue between the researchers and their target public is not so easy. That mission is becoming even more complex these times due to the emergence of new and challenging problems in the society. Trying to fill this gap, our team sought to address significant issues related to the public affected direct or indirectly by our project and by the advances of synthetic biology. We planned and implemented actions that could reach the most different public and education levels by the use of multidisciplinary approaches and a two-way dialogue.
Since our project has as its main objective the development of an alternative therapy to cancer, our first step was to identify the target public for it and the cycle of prevention, diagnosis, and treatment of the disease. The Amazonas state (Brazil) has an alarming rate of incidence and mortality by cervical cancer. Consulting the National Institute of Cancer (INCA) we discovered that even having a small population compared to other Brazilian states (about 4 million people), Amazonas leads Cervix uteri cancer ranking. INCA previewed a proportion of 41 new cases of Cervix uteri cancer per every 100.000 women in the Amazonas States only for 2019, while for other states was 15 new cases per every 100.000 women. In 2018, the mortality of Cervix uteri cancer grew 50% in the Amazonas State. These data gave the team a great feeling of responsibility and motivation to contribute to a more effective and universal treatment for cancer, but mainly it alarmed us for a problem faced by our state. Cervical Cancer, when associated with HPV (70% of the cases), is one of the most preventable cancers, since it has a well-defined screening like Pap test. Then, the sky-high rates in Amazonas evidence the need for socio-educational interventions about prevention and population awareness.
Our journey began with the search for professionals who were in direct contact with cancer patients. We spoke to doctors, professors, and psychologists about their relationship with patients and how the classical approach of just looking at the disease and not directly to the patient was left behind. Through our conversation with experts and after reading several works, we realized that our Human Practices should have as a strong purpose to truly connecting our team to patients and the general public, promoting helpful and supportive actions as well knowledge and public engagement. Since we knew that oncologic patients usually are emotionally vulnerable, we realized that to access this specific public we needed to follow a more sensitive and less invasive path. Then, we got in contact with teacher Rosana Moysés, a researcher with more than 8 years of experience in public health and, through a lot of meetings and discussions, we developed together what came to be Rethink, a photographic art exhibition that revealed the face and feelings of several women passing through cancer treatment in our city. Also, during our meetings, we recognized an important piece of the puzzle, the alarming rates for prostate cancer worldwide. That also motivated us to research and talk to specialists about male health, to find how could we improve our educational work.
When our activity with the patients had already started, we thought that it was time to talk to kids and teenagers about prevention in cancer and our project. In this context, we wanted to explain how Synbio can be used to solve local and global problems. When talking with people we always followed the line of creativity and simplicity, aiming to construct bounds with them. This ensured that our team could be listened to and also could be a listener, sharing and exchanging knowledge. Using this approach, we realized that not only our activities became more effective, but also we felt more engaged and motivated in all the extensions of our work, having a real positive return from the public. The opportunity of teaching and learning in so many ways, with so many diverse people, being specialists, students or a common citizen, taught us how the connection between science and society is crucial and can directly impact our research design and mostly our daily enthusiasm and inspiration.
Science has also to bridge the gap between research and policy by providing a place where the members of the scientific community can engage and interact with its local public policies. Our team had the opportunity of participating in a a new platform for scientists in the state of Amazonas created that enables the access to fundings for science directly with our representatives in Parliament. Here, we share a framework of how we performed this and how scientists in our state can use this resource.
One of our biggest motivations for this year's project was the outrageous numbers of cases and deaths attributed to cervical cancer in our state. Acknowledging that, we realized that our Public Engagement activities needed an approach that could not only reveal such neglected matter but also the women behind it. Then, in partnership with the Integrated Activities Hub (NAI) from UFAM (Federal University of Amazonas) and within the purpose to give voice and visibility to these women on how the illness and its consequences have affected their lives, we developed Rethink.
Rethink consists of a photographic exhibition about women who suffer from cancer in our state. Most of them live in the countryside of Amazonas, where the access is only led by boat. Then these women saw themselves forced to leave their homes and families behind, to come to the capital (Manaus) and pass-through treatment in the State of Amazonas Oncology Control Center Foundation (FCECON).
When they have no place to go, they find free shelter in Lar das Marias, a non-profit institution that today houses 30 women undergoing cancer treatment in Manaus. There, they can find a second home, to feel safe and supported.
The photographs were taken in a conversation with six women from the Lar . Our team, supervised by the psychologist from the house, talked with patients that for free will accepted to participate, about the following topics: Illness, treatment and the thing that they most value today. Our conversation was not recorded or written, the only thing cataloged from these moments were the photographs, which reflected each woman’s feelings about their own story.
When the pictures were selected and printed, the exhibition was finally on its tracks to start. We were able to exhibit our work for two weeks in a Shopping Center, located in a popular neighborhood from the capital. In order to allow the public to communicate and express their feelings towards the exhibition and the women from the Lar , we used post-its in an exhibitor with the phrase “Leave a message to the women from the Lar das Marias.”
For our great surprise, we had an amazing feedback from the public for our work! Every time we had a chance to check the exhibition, we could observe more new messages in the panel, most of them giving positive feedbacks and encouraging words.
The messages were passed on to the patients over a meeting that happened in the Lar , where our team read the words from the public, showing the love and compassion they received from strangers who were moved by the feelings that photos alone were capable to transmit. Having the chance to show how they weren’t alone was a truly special moment.
This work demanded a lot of passion and care from our team. We were so deeply involved in the journey to reveal these women and their beautiful and powerful expressions, that the effect in our work and personal lives was visible. We became more sensible and engaged in social works, realizing the true importance of interact and comprehend people to set up a truly effective and beneficial project for society itself.
To provide at least part of the experience of being in the true exhibition, we would like to invite you to an online experience:
Planning our activities in Lar das Marias, we did a lot of research on cancer incidences worldwide and during one of those investigations we noticed the rates for prostate cancer and discovered that it's the third type most responsible for deaths per year, losing only to breast and lung cancer. In Amazonas, the rates are also alarming, just between 2018 and 2019, about 1.160 men are expected to develop prostate cancer, a proportion of 27.69 people per 100.000 people/year. Recognizing that, our team realized that we had been neglecting a population that is also severely affected by cancer: Men.
When we started reading about the subject, some details like the influence of social standards in men's health caught our attention. It was clear for us that it was time to talk to a specialist about it and we decided it should be an old friend of our team, Dr. Maria Graciete, a psychologist from the Amazonas Oncology Control Center Foundation (FCECON) with more than 25 years of experience.
Shot from our meeting with Dr. Maria Graciete
She talked to us about how men usually have a harder time to accept the disease, mostly because they associate it with a loss of independence and virility. We asked if stereotypes were one of the main causes of this misunderstanding, and she confirmed our presumptions:
"Yes, yes. Many men, for fear of been associated with anything that resembles homosexuality, prefer not to do the DRE (digital rectal exam) and when they come for help, their case is already much worse. (...) Some of them get angry and refuse to accept the disease. (...) It's complicated for women (to accept the situation), but for men can be even more.
Talking to her made us reflect on the importance of prevention and how even some pre concepts have to be left behind in the name of health. Reinforcing our beliefs, a patient offered to talk with us about his victorious story, which he attributes to the preventive exam. The patient Eliazib Serrão Bezerra Filho, 64 years old, told us that he started doing the preventive exam at age 40, as he always knew the importance of it. Eventually, in a periodic examination, he discovered the existence of a lump, shortly after diagnosed as malignant. For being diagnosed at an early stage, he consequently had time to treat and have a successful surgery, being until this day free from any possible consequences the disease might have caused. To our team, hear a victorious story like that, made us more engaged in our educational work, aiming to somehow have a positive influence on this matter.
\(\boldsymbol{\cdot} \) Virada Sustentável (Sustainable Rebound)
The rebound is a mobilization that organizes a festival of sustainability in Brazil and it is recognized as the greatest event of this in Latin America. The main goal is to insight inspiring and positive ideas of sustainability and related topics. In 2019, it happened in 7 cities all over the country, including our city, Manaus. The activities occurred to reach all the population and to spread the goals for Sustainable Development from the United Nations Organization.
Facing the actual situation in Brazil, where science is being distrusted, researchers, professors, and students from diverse areas have reunited to organize poster presentations in public places. These presentations aim to show the population why science matters for the country's development and why we need to invest money in it.
During the event, which happened on July 27th, the Women Union of Biology from the Federal University of Amazonas (UFAM) organized a poster presentation exclusively for women who have projects in related areas of biology. At the event, one of our members joined the Union and explained a little bit of synthetic biology, iGEM and our project BeliEVE.
\(\boldsymbol{\cdot} \) Brazil Conference at Harvard & MIT - Manaus Edition
Brazil Conference at Harvard & MIT is an annual event held in April, organized by the Brazilian student community in the Boston area since 2015. The event was created in 2014 by brazilian undergraduate students and it was the representation of a movement that wanted to bring Brazilian intellectuals to Boston, a well-known knowledge center, so that they could discuss here the challenges and possible paths for the country. The main goal of the event is to establish a plural space for debate and the creation of ideas about our country, extending it to as many people as possible.
The event’s promoters realized that by creating regional and smaller events held in Brazil and inviting acting figures in subjects such as Science, Education and Entrepreneurship they could create an atmosphere of progress approaching real-life and local problems. In 2019, the first time the regional edition was done in Amazonas, our instructor Giovanna Maklouf was invited to the +Science panel which addressed the importance of knowledge production and impact of science popularization in the state of Amazonas.
\(\boldsymbol{\cdot} \) Talking with experts
We had the opportunity to attend a regional oncology congress, which took place on September 17th. Given the fact that synthetic biology can be new to many scientists, our goal was to present the basics concepts, show possible applications for cancer therapies, and also explain about our project BeliEVE. At the end of the presentation, the researchers showed interest in our project and they were surprised about the use of bacterias to deliver substances of interest. We made some contacts for future collaborations and we got happy for the great enthusiasm and interested of the public for synbio.
\(\boldsymbol{\cdot} \) Talking with teenagers
Our group participated of a modality of action that accompanies the school’s semester. This program named PACE - Program of extension curriculum activity- aims to encourage teachers, students, and communities to be involved in extension actions of the Federal University of Amazonas (UFAM), which is a way of disseminating scientific and technological knowledge to society.
Cancer and HPV
Noticing the alarming rates of cervical cancer associated with HPV infection found in the state of Amazonas, our team engaged on the task force of informing the young public about this endemic disease in our state and to talk to them about the available prevention methods. We gave lectures for high school students at the Federal Institute of Amazonas (IFAM),. We sought for methods to access students in a way that they could learn while having some fun within the activity. So, to begin we divided students into groups of up to five people and started by doing a general knowledge quiz about HPV. In this activity, the students listened to a description of a subject and marked with the words "truth" or "myth" to say if the group agreed or not with the statement. The students were fully participative and excited to answer correctly the questions.
The presentation of the theme was gradually addressing the concept of sexually transmitted infections, focusing in HPV: its transmission, signs and symptoms, the risk factors associated, the HPV relationship with cervical cancer as well as its incidence on Amazonas state and topics such as HPV treatment and prevention.
At the end of the lecture, all students were very curious asking questions about the subject. In addition, our team did a new activity with the students where they had to try to identify slides of cervical tissue with precursor lesion of cancer the explanation given to them in the lecture. The activity followed the schedule and objectives that our team proposed and we cleary saw that the students were very interested and participative in the content also exposing their doubts without any fear.
Synbio
In addition to PACE HPV, we committed ourselves to the popularization of Synthetic Biology and iGEM at high school. One of ours team members came from one of those lectures of synbio that our group usually do during the year, so we have this real example of how this kind of activities can touch the students and open their minds for synbio world. We made a presentation about SynBio concepts and terms using metaforic language and focusing in very simple examples of synbio, so the high school students could easily understand our talk without needing an extensive background. We explained the difference between Genetic Engineering and Synthetic Biology and we associate synbio to the idea of PACE HPV to show how synbio can be a tool to solve various problems, such as cancer.
We also introduced them to IGEM competition, the history of our team in the competition, our achievements and our actual project BELIEVE. That was really important to show to these young students how they can engage early in science.
To prove that everyone understood our explanations we did a group activity in which students had to produce a three-way assembly. We distributed scissors and glues, representing restriction enzymes and DNA ligase, and 3 plasmids. The activity went nice and demanded concentration of the studensts but it was also a moment for they ask us concepts and methods., but the students n the end we demonstrated a sealed petri dish with GFP, contextualizing the results of these kind of sequence assembly.
\(\boldsymbol{\cdot} \) Talking with kids
On July 10, through a partnership with “Circo da Ciência”, we participated in the Summer Camp from the Institute of Culture Brazil - United States (ICBEU), an event directed to the children that attend the institute. We performed our activity at the Science Day, where we talked with kids, ages 5-12, about DNA, bacterias and Synthetic Biology using creative activities to keep the experience easy and fun to learn!
To the youngest kids, we talked a little bit about bacterias and how they not necessarily always meant a bad thing. For half of them, we gave a couple of illustrations from bacterias, DNA and scientists for painting. The other half received modeling clay, strings and plastic eyes, while they were instructed to construct bacterias in their own way. To the older kids, the conversation were taken a little further, talking about some of the principles of Synthetic Biology and the things we can get from it. From that, we demonstrated to them a simple DNA extraction from bananas, showing a practical example of the concepts.. We were truly happy to hear things like “But we want to see more!” when the teacher said it was time to go.
Allies building a new framework for science funding in Brazil
These actions were based on the Brazilian Federal Constitution along with the Annual Budget Law (LOA) and may be required by the entire scientific community of the country. After consulting on international governmental policy experts, we were able to understand that various constitutions have similarities in social investment through public budgeting. Thus, the following information can serve as a model for other teams in various democratic countries.
In early 2019, Brazil’s government announced the freezing of 42% of the budget for the country's Science, Technology, Innovation and Communications Ministry. Most of the scientific research and institutions in Brazil is funded by government grants. This means that from now on the majority of scientists and laboratories will need another source of funding to maintain the actual lab structure, facilities, and scientific human resources.
For the iGEM Amazonas-Brazil it isn’t different. Our team has been receiving public support from the institutes and research funding agencies along all these years in the competition. But in the two last years, our team began a journey to find new and creative ways to find funding resources. Then, when we came across the Parliamentary Amendments.
Every year the federal government needs to draft a budget bill that determines federal spendings and then it’s presented to the National Congress for evaluation. In Brazil, the budget is prepared by the Executive, that is, President and State Governors. This is where the Parliamentary Amendments come in, the opportunity for Senators or Deputies to add new budget schedules to meet the demands of the communities they represent, influencing in what the public money will be spent on.
Annually, each parliamentarian has a quota of approximately 3 million dollars to implement 25 amendments in order to finance a public work or projects in their state, being necessarily half of the amount intended to health. Non-profit Arts & Culture Organizations and Neighborhood Associations already utilize this mechanism to fund their projects and to strengthen communities and social groups that are directly linked to these projects. However, scientists are not used to look for this mechanism as a funding resource.
Our first question was: How a scientist can access this money? The first step is to make an Parliamentary Amendments, as described above.
We followed these steps to get our iGEM budget this year. We spoke with Luiz Castro de Andrade Neto, a Congressman elected in our state that has education as his primary flag. We elaborated a document that was approved by the majority in Parliament. So we thought all the things were ok, but we came across a problem: scientists have never used Parliamentary Amendments for research grants in our state and the Amazonas State Research Support Foundation (FAPEAM) didn’t have a pipeline to legally process the money and ensure the correct use of the resource.
Due to that, the Amazonas_Brazil iGEM dialogued with Amazonas State Research Support Foundation (FAPEAM) to bring up solutions for the absence of regulation in the use of Parliamentary Amendments’ money destined to research projects. We were concerned about the implementation of the Parliamentary Amendments not only because it was important for us but also because we would like that the solution would come as a local advance for Amazonas’ science. Finally, FAPEAM developed the Support Program to projects funded by Parliamentary Amendments- PROEMEND, a program where a broader spectrum of projects related to science can receive funding through Parliamentary Amendments.
Now scientists in our state have another source of funding for science and the Amazonas_Brazil iGEM team in 2019 was the first research group to receive money using Parliamentary Amendments through the implementation of an institutionalized program, the ‘ProEmend’ of the Amazonas State Research Support Foundation. We record here all the process we went through so the entire scientific community can be aware of it and also engage with this resource.
