Team:IISER Berhampur/Human Practices
Inspiration
Radhika Jagtap (MDR-TB Survivor) -
There is a lack of availability of robust diagnostic tests in remote areas of India. Even in the developed urban areas, there is a lack of hygiene due to a lack of education and awareness among people, especially from low-income backgrounds. One thing we discovered that was shocking but true at the same time was that the COVID-19 pandemic has pushed India years back in the process of eradicating TB. Again, the treatment process is very costly for an average income family which includes the diagnosis, different tests, medication and diet. To reduce transmission of Mycobacterium tuberculosis (MT) early diagnosis and adequate treatment are necessary. Hence, Radhika emphasized that there is an urgent need to develop new rapid, cost-effective and accurate diagnostic methods with higher sensitivity and accuracy.
During the interview we realised that not only patients’ physical health is affected, but there is a serious impact on their mental health too. TB being a contagious malady, restricts the host to isolate himself/herself leaving them with a vulnerable mental condition. If the breadwinner of a family gets affected, then the monetary supply faces a halt leaving the whole family with much worse conditions. As a team, our goal was no longer only to accomplish iGEM achievements but also to make moves that can help change the situation in the outside world. This session gave us a clear vision for our project and helped us riddle out the target population for our Human Practices work.
Dr. Shaik Taheruddin (Resident Doctor, Department of Microbiology, MKCG Hospital, Berhampur) -
Majority of the MDR-TB cases are diagnosed at speciality hospitals and there is a serious issue of lack of diagnostic systems in both rural and remote areas. The majority of the people affected by TB are migrant workers between the age of 18 to 70 years. These people usually live in a compact area (small housing area) and live in joint families making the spread of infection rapid. Being trained in microbiology and having spent some time with patients from rural areas, Dr. Taheruddin provided us with crucial information regarding TB and MDR-TB, the current conditions of diagnostics of TB and MDR and status of patients. We further got to know that one of the major reasons behind the prevalence of MDR TB is the exorbitant costs associated with the tests. Most of the people from rural parts of India are not able to afford them. This motivated us to develop a more cost-effective, easy to handle, simple diagnostic system.
By now, our team had figured out the major issues we had to address while building our solution. We already had an idea of the proposed solution but that was in a very raw stage. As a team of undergraduates, this is a project like none we have done before. The solution we were looking for was a multifaceted approach that needed intense research, advice from experts and exploring ideas. At the basic level, we started with a literature survey on various aspects of the project. With developments coming in we were still unsure about the possibility of working in our labs. For the time being, while waiting for our labs to reopen, we conducted several ones on one interview and discussion sessions with stakeholders like Dr. Taher, Dr. Arun, Dr. M. Madhan Kumar, who are experts in the field and can introduce us to the real world and the real-life problems faced by TB patients and by doctors while diagnosing and treating them. Through human practices, we received important inputs which refined our project at every stage.
Evaluation
The team always used the findings and suggestions from the interviews and interactions with various stakeholders. We combined the inputs with our ideas and validated it by stakeholders. COVID-19 Pandemic not only improved the engagement for the drug industry but also raised the research commitments for the diagnostic industry. Evaluation/assessment of a project like ours is an important step. There are numerous components which need unbiased analysis to confirm our goals.
Prof. Rajesh Gokhale
BACKGROUND : Prof. Rajesh Gokhale is a chemical biologist who is known for his studies on metabolic diversity of pathogens.
SUGGESTIONS: Introducing a new diagnostic kit in a community with existing diagnostics kits is not going to be easy. With immense experience in the field of entrepreneurship and research, he helped us understand the problems our prototype is going to face in the real world.
IMPLEMENTATION: As we were working on a diagnosis tool using synthetic biology, the processes required were very complex and of major concern while considering the goal of point of care diagnosis. The team started cost-analysis for the prototype construction and for individual tests after Dr. Gokhale suggested it to us. As our experiment had biosafety concerns regarding using Mycobacterium tuberculosis in the lab, while discussing, he suggested we use BAC clones for our experiment. He also helped us by providing BAC clones for rpoB and katG genes.
Dr. Nishad Matange
BACKGROUND :Currently working as assistant professor in Department of Biology, IISER Pune. His work is based on evolution and Genetics of Antimicrobial Resistance in Bacteria.
SUGGESTIONS: He suggested doing a proof of principle study and calculate sensitivity of assay and compare with other techniques available. Extending the strategy to XDR-TB detection.
IMPLEMENTATION: Interaction with him helped us in realising that we need to read about more mutations to make our kit universal or find a different approach using wild type DNA to detect mutation. Another option may be to look for non-wild type strains first and then have two pipelines, one for MDR and another for XDR.
Sundaram Acharya
BACKGROUND : Currently a Senior Research Fellow (SRF) c/o Dr. Debojyoti Chakraborty (CSIR-IGIB).
SUGGESTIONS: He gave inputs on LAMP methods and provided insights about commercialization of our TB kit. Advised us to focus on important aspects of developing a detection kit - its specificity and sensitivity and cost analysis. He informed us that LAMP amplification products are 100-300 base pairs and therefore he suggested that to use specific sequences which act as mutation hotspots. We learnt about the limitation of LAMP amplification which results in 100-300 base pairs only. Therefore, we implemented this suggestion by going back to the designing process and targeting the RRDR sequence of rpoB.
IMPLEMENTATION: Interaction with him helped us a lot in devising strategies for using LAMP in our wet lab protocols. He also shared several resources which enhanced our understanding of LAMP and it’s usage. We decided to amplify a selected sequence RRDR (Rifampicin resistance determining region) of rpoB gene to overcome the limitations of LAMP.
Professor Sridhar
BACKGROUND : He is currently working as Dean, Research and Development and Head of Biological Sciences, IISER Berhampur.
SUGGESTIONS: We had a very elaborate interaction with him. He weighed on various aspects of our project. He emphasized on the need to work on the price of our kit. Compare it with existing kits on various levels (like costs of some areas will be the same i.e. costs at diagnosis industry).
IMPLEMENTATION: He suggested we look into the detection part and learn about fluorescence (its saturation and how it affects the results), sensitivity and specificity which helped us a lot in devising our wet lab protocols.
While discussing our Epidemiology model, he advised us to compare the spread of TB in two cities - a) Tier 1 (robust diagnosis infrastructure) b) Tier 3 (poor diagnosis infrastructure)
Professor Sutirth Dey
BACKGROUND : He is currently a professor in Department of Biology, IISER Pune.
SUGGESTIONS: He reviewed our epidemiological model and gave us important inputs about our proposed model.
IMPLEMENTATION: His vast knowledge on Biostatistics helped us a lot in modelling of our proposal. He provided us Biostat resources which helped us a lot in our epidemiological model and also later in our project.
Implementation
The team started the project with the idea of implementing this prototype in the real world where it will help with the early detection of MDR-TB cases. To gain more information about the market potential of a diagnostic kit to be implemented and the precautions that need to be taken, we went forward with people who had quite some experience in this field and are well known for their work. Our goal to build something that can be used even in remote areas was a very inclusive approach and thus figuring the primary aspects of implementation was important.
Prof. Rajesh Gokhale
As the team was planning to introduce the prototype to the real world, a well established plan was needed. Dr. Gokhale suggested we work on the cost aspect of the prototype. Other than that, he also advised us to be careful with the biosafety regulations for such devices.
What did we discover
Our interaction with various stakeholders revealed that India is still on the top list of TB cases detected. The Government plays a very crucial role in generating awareness and supplying essentials to affected people. However, these efforts are not enough.
This process of fine-tuning the project considering inputs from professionals of various fields and following the design of reviewing every aspect helped us a lot.
Introduction
iGEM was not only about tackling a problem within lab boundaries, we knew that our process had to include the real world and stakeholders. During the planning phase of the project, we kept in mind the fact that the results of our works are going to affect our community and society as a whole, therefore we have to be rational. Our vision was to improve the public 's understanding of the situation of TB in India, establish means for general people to know more about iGEM and the research going on by different teams.
The feedback and suggestions we gathered over the time from different events were used to improve our project thus making it possible for us to involve the real-world.
Timeline
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APRIL
•Brainstorming for awareness activity.
•Social media introduction to the team.
•Analysis of potential sponsors.
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MAY
•Understanding the role of stakeholders and examining stakeholders for our project.
•Meet with team iGEM Vilnius.
•Initiation of science communication activities.
•Meet with team iGEM IISER Tirupati.
•First interview with Dr. Shaik Taheruddin.
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JUNE
•Team meets for possible collaboration and partnership.
•Stakeholder interviews.
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JULY
•Launched “SynVerse” podcast on spotify and youtube.
•Attended Russian meet.
•Started working on project management.
•AIIM: All India iGEM Meet .
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AUGUST
•IGCC ( iGEM global CRISPR conference ), launched slack channel works as a common collaborative platform.
•Meeting with Theraceus.
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SEPTEMBER
•Integrating interview feedback results. Participated in several synthetic biology symposiums and conferences.
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OCTOBER
•Documentation and final implementation of Human practices activities.
A small survey
Before we could design a test kit for MDR-TB, it was necessary to know how much people actually know about TB and MDR TB. It is almost impossible to eradicate TB unless people are well aware about the disease. In order to know some exact data, we gathered responses from high school students studying in local government schools. Following were the questions asked. These questions might seem simple and naïve but we still got diverse answers to some of them.
While taking the survey, full confidentiality of the people filling up the responses was maintained. *Respondents are kept anonymous and the responses are solely for research purposes.
Almost every student was aware that TB is caused by a Bacteria.
Around 77% of the students knew that TB only spreads through breathing in close proximity to a TB patient. We still got 10% of students believing that TB can be spread via shared utensils.
Only 80% of surveyed High school students heard something about Drug Resistance.
Whereas a large portion of students heard about drug resistance, but only 57% knew about MDR-TB. 43% of Students were not aware about MDR-TB at all!
30% of students didn’t know about the reason for Development of MDR TB. It is a fairly large portion of students. This motivated us that there is a huge need to spread awareness about MDR TB and TB among local people and in their local languages. Not only local people, awareness among school students about scientific reasons, factors, symptoms etc. about MDR-TB had to be done!
We contacted several NGOs working for TB eradication and a discussion with the people involved, helped you to understand how the affected communities suffer with the disease and how awareness can make this information gap overcome the myths considered by people.
We contacted Mr. Kazi Hilal Nawaz (Senior Treatment Supervisor, at District Tuberculosis centre, Bardhaman Sadar-I, West Bengal.) He helped us understand the current state of detection systems for TB and MDR-TB in INDIA. He also explained how CBNAAT, despite being very easy to use, is very costly and because of this it is not present at the periphery level. He also helped us get the actual cost of the detection kits which helped us in our cost analysis. Apart from these, he described what all policies, schemes are there for the eradication of TB. There are many government run initiatives already present, but one of the many hurdles in the path of achieving success is that most people are not informed about this. To lower down this hurdle, we planned various outreach activities in order to promote the government run TB related initiatives.
Crowd Funding
After we interacted with Ms. Radhika Jagtap and other stakeholders, and after the survey we did, we came to know that one of the reasons behind MDR TB spread is lack of awareness among local people.
Drop by drop, fill the ocean! With this motto we initiated a crowdfunding campaign for one of our outreach activities in September. Fortunately, we were able to raise ₹37,000 (490 USD) in just 30 days. With the help of this, we distributed a handmade small awareness booklet in regional languages among local people. The booklet contains information about various symptoms of TB, what to do if someone experiences such symptoms, who to reach out to, nearest TB help center. It also contained contacts of various NGOs and Government schemes working in that area for TB patients.
Apart from TB related information, our booklet also contains some basic synthetic biology facts and concepts illustrated in a comic strip manner. This helped to ignite synthetic biology among younger generations. After all that’s the true spirit of iGEM. All this information was depicted in a creative and illustrative way, so as to make it as easily accessible as possible.
In order to avoid wastage of paper and keeping carbon footprints in mind, we upcycled scrap paper (half used/one side used) and we even recycled shredded paper to make cover pages of the booklet. In this way our booklet is eco friendly and cost effective!
