Human Practices

“The world ignores design that ignores the world” - Frank Chimero

Introduction

In our unyielding mission to combat Neglected Tropical Diseases (NTDs), HelmiGuard transcends the lab, driven by the power of – a force that binds our scientific innovation with values of compassion, cultural understanding, and societal impact.

To develop an informed and human-focused project, we followed the iGEM Human Practices cycle to guide our initiatives. Check out the areas of the cycle to see some highlights of our work!



HelmiGuard embodies our commitment to fortify our foundational knowledge in NTD prevalence, engage in responsible research practices and cultural sensitivity, and invest into the future. By doing so, we hope to combat the long-standing and socially complex issue of NTDs, to create a meaningful, positive impact on the affected communities.

In our work, we made sure to reflect at each step, and incorporate our learnings into the decisions we made regarding our project. See below for our act-by-act breakdown of what we learned, and how it helped us innovate with empathy.


Acts



Act 1: Learning


Highlights from this Section:

  • We started with reflections and informal discussions to help us understand the complexities of the issue at hand.
  • We examined the various factors that impact NTDs, ranging from political climates to religious beliefs in the communities.
  • The takeaways from this section helped us make key base decisions regarding our project, which were later supported by our conversations with researchers.


When we first envisioned Helmiguard, we recognized the importance of understanding the community we intended to serve.

The issue of NTDs is extremely complex, and affects the real lives of billions of people in international regions. In order to begin to address such a large and neglected issue, we felt that it was crucial to start with building up our foundational knowledge of impacted areas. This helped us make decisions about how to develop our project,while also ensuring that when implemented, this project will have a positive impact on the world.

Reflecting on the Problem:

When generating our project idea, we started with discussion to explore why the issue of NTDs exists, and why it has gone largely ignored. We wanted to answer the question - what do we believe makes these diseases such a complex issue to tackle?

In doing so, we had conversations among our team, as well as with our peers and informal chats with our advisors and PI. We constructed the following thought web, to symbolize how a variety of factors interconnect to cause this intricate problem:


From this web and our personal reflections, we realized we should do research into the affected communities and their environments. This would help us determine how our therapeutic might exist in a real-world environment, as it interacts with people and societies.


Foundational Knowledge: The Factors at Play

We then began exploring various factors influencing the spread of NTDs, ranging from politics to religion. Exploring these issues at the start helped us to develop a base understanding of the needs of these communities, and how they can influence the shaping of our project.

See below for a schematic showing the various issues we examined, as well as their detailed descriptions.



Socio-economic factors play a crucial role in the spread and management of NTDs. Animals, such as stray dogs, swine and sheep, are hosts of various NTDs, including echinococcosis and cysticercosis.

The transmission of NTDs from these animals to humans are especially prevalent in areas living in poverty, where pasturage is the common source of income. With poor meat preparations and lack of access to basic hygienic facilities and clean water, parasites persist in the living environment and food sources. Lack of access to appropriate medical care, doctors, and facilities is also a large issue in these areas due to lack of funding and locations further from main city centers.

Religion & cultural values in areas affected by NTDs influence practices related to animal products.

  • Buddhist doctrines are a predominant philosophy, which teaches that all organisms should die a natural death, and the disposal of animal viscera post-slaughter is unrestricted. Stray dogs also tend to eat the remains of dead livestock, which gives rise to high rates of echinococcosis.
  • Many affected areas have large Muslim populations, which avoid the consumption of swine, and generally avoid keeping and working with swine as well.
  • In some affected regions, gender roles are upheld in different ways - women may be more likely to work within the household to complete tasks such as preparing food, while men are seen as “earners” for the family and be tasked with more physical labour outside the home.

The political landscape of regions where NTDs were highly prevalent plays a crucial role in healthcare management and disease progression.

There is usually a limited governmental financial budget allocated to the control of NTDs, as a greater priority is given to diseases like HIV and malaria. In decentralized government systems, many stakeholders are involved, leading to difficulties in implementing national-level large scale policies. The lack of policies in regulating meat inspection and practice of home slaughtering of animals contributes to the spread of NTDs.


Key Takeaways from this research:

Our solution must be something highly affordable, which should be relatively easy to store, distribute, and administer even without access to high-end medical care. We must create a solution that will respect the beliefs of the communities involved. These ultimately lead to us choosing an oral vaccine created using a phage system that can be stored at a wide range of temperatures. Further details on how this research affected our project development can be found in the “innovating with empathy” section of this page!


“There’s so much at play here…it gives us insight into everything that makes these diseases neglected, and keeps these communities trapped in the cycle of poverty.” - Team Member

Keeping our reflections and learnings in mind, we wanted to focus on hearing more from the stakeholders and impacted communities, to broaden our perspectives with theirs.


Act 2: Understanding


Highlights from this Section:

  • We identified the key stakeholders when it comes to the issues of NTDs - this includes the communities, researchers, and the broader world.
  • We reflected on how to engage in a helpful, rather than harmful way.
  • We engaged with our local community of students and scientists, as well as global researchers from impacted areas in Indonesia to get guidance and feedback for our work.


Identifying Stakeholders

In order to engage the community in our work, we first set out to define who would be impacted by our project. We have outlined major stakeholders from a variety of areas below, and highly encourage other iGEM teams to do the same:

  • NTD Victims and Affected Communities: These are the people who would most directly be affected by HelmiGuard, and the people we are working to serve. Patients and families are affected by symptoms, but the broader community is affected by the stigma, cycle of poverty, and lack of awareness.
  • Academics: Researchers like us are able to develop solutions, research diseases, and spread awareness in the scientific community.
  • Health Organizations & Governments: These policy makers are involved in large-scale distribution, administration and policy making efforts.
  • Activist Groups: These groups are fighting to help educate the public and reduce the stigma around NTDs.
  • Pharmaceutical Companies: Will be directly involved if a therapeutic such as ours is able to be developed, will have the most contention with a cost-effective solution.

This led us to our conversations and interactions, which are outlined below.


Understanding how to Engage:


Once we had done our personal research and reflections, it was time to engage the stakeholders in our work, to see if our vision for a solution would align with theirs. Before doing so, however, we engaged in some more analysis: how could we ensure that we were engaging in a respectful way?

“Many NTD impacted communities are already extremely vulnerable, and we should not exploit the people who are suffering to promote any kind of solution.” - Team Member

We created the following table to show how our project, and other projects, can navigate interactions with affected communities. We hope that this will also be a useful resource for future teams as they engage in human practices work.



This helped us form standards for the ways we engaged with our community. We recognize the importance of respecting the cultural customs in areas impacted by NTDs and strive to use language that demonstrates sensitivity when conveying concepts related to diverse cultures and belief systems.


Engaging the Community: Our Conversations with Stakeholders

The Affected Populations: Indonesian Health Ministry

Throughout our research on socio-economic factors, we learned about a case study on the Indonesian region of Papua. We are profoundly interested in understanding more from a perspective of closer stakeholders of our interest.

The Papua region in Indonesia is one of the places where cysticercosis is highly endemic. Even though the Indonesian population is predominantly Muslim, several regions (such as Bali and Papua) have the majority of people having pork in their diet. A successful effort to eradicate the disease in Bali has dropped the case prevalence to 0% since 2002. However, although some control efforts have also been applied, Papua still has a 45.8% case prevalence, one of the highest in Southeast Asia (Aung & Spelman. 2016).

In this collaboration, our team connected with the Indonesian Health Ministry to understand why a certain region is much harder and takes longer to eradicate the disease even though the same government and system are in charge. We aim to get more insight into the societal aspects that keep the infectious cycle alive, and how our vaccine can play a role in stopping it.

We talked to Mr. Semuel Sandy, an Indonesian Health Ministry researcher in West Papua. He conducted research into the risk factors associated with Taeniasis and Cysticercosis. From our discussion, he stated that factors such as education level, cultural practice, geography, and economic ability play a key role in putting the community in Papua in considerable vulnerability.

Geographically speaking, Papua is about 15 times larger than Bali and consists of mountainous terrain. This results in less established infrastructures that can connect government or non-governmental organizations to control and treat the disease effectively. He said that some areas can only be reached by small planes because land logistics is impossible. Of course, this creates more economic burden on the prices of any efforts to reach the community.

Therefore, modern sanitary facilities in these areas are also lacking. When the necessary facility to ensure drinking water is safe and separated from wastewater is not present, cysticercosis is easier to exist.

The issue branches out to the education level of the people as well. It is hard to imagine an appropriate school system can exist in such a condition. So, most people only attend elementary school or do not even have formal education. Therefore, Mr. Sandy said it is crucial to create a more down-to-earth educational campaign regarding the disease involving some figures who are close to and heard by the community, such as the village chiefs. Important knowledge, such as identifying infected porcine, hygiene practices, and proper cooking methods that reduce the chance of helminth infection are some topics that should be given.

However, he said that the attention to this disease is still lacking. Most research and funding go to treating higher mortality and morbidity diseases such as malaria, HIV-AIDS, TB, diarrhea, and dengue fever. NTD diseases, including taeniasis and cysticercosis, still receive a relatively small budget for disease control programs at the district and provincial offices, so the helminthiasis survey does not run well.

Support and commitment from policyholders are needed in allocating a proportional budget to achieving the target of reducing the prevalence of helminthiasis, which is supported by stakeholders from related agencies.

Key Takeaways from this research:

Based on our discussion, we believe that it is important for our vaccine to provide a way to reduce the reliance of the most isolated communities on health facilities and infrastructures.

We designed our vaccine to be thermo-stable (by choosing to use AAVP technology) and orally taken, which should give less burden in the distribution of the vaccine to these areas as well as the percentage of people willing to take the vaccine without pressure (unlike a vaccine that requires a needle and trained professional for injection).

Gaining immunity to this disease is a way to give these people more independence from constantly relying on expensive anthelmintic medicines, or spending their resources on going to the hospital to treat more serious conditions resulting from cysticercosis. By stopping the infectious cycle, they can finally live freely from the economic and health burden created by this disease. However, Helmiguard is only a small component in the fight against NTDs.

This conversation also lead us to pursue Education as a main part of our project - for our efforts in this area, please refer to our Education page.

Researchers & iGEM Teams: CANADA SYNBIO

Our team also had the chance to attend the Canada SynBio Conference - here, we got to hear from various researchers in the heart of Toronto’s Innovation District. At the conference, we were also able to interact with other Canadian iGEM teams and prominent researchers and gain valuable insights on our project work.








From our informal conversations with researchers and the presentations we saw at the conference, we appreciated the importance that sustainable elimination of NTDs requires the collaboration of organizations and stakeholders, both public and private. It is essential for affected communities to have access to adequate sanitation, basic infrastructures with a focus on increased awareness and education within and outside of affected populations to reduce stigma.

We also recognized the importance of respecting the cultural customs in areas impacted by NTDs, and decided to strive to use language that demonstrates sensitivity when conveying concepts related to diverse culture and belief systems.

As NTDs mainly impact rural areas, conflict zones, and hard-to reach-regions, it is vital to consider how introducing a new treatment may disrupt or interact with local cultures, communities, and peoples. Therefore, we saw that it is essential that strenuous tests and trials are run to validate the safety and effectiveness of HelmiGaurd before introducing the vaccine to any communities.


MODEL UN

Science isn’t just about researchers and the people you want to help - science is a global phenomenon, bringing together people from all fields and walks of life to create solutions.

In order to engage with the broader community and simulate learnings as they might occur in global organizations, our team collaborated with the McMaster Model United Nations Society to host a structured debate surrounding Vaccine Distribution Concerns around the world.









During this debate, we got to listen and participate as our peers took the roles of international delegates, and shared their perspectives on the concerns that come along with distributing vaccines on a global scale. In this way, we were introduced to a whole range of new thought processes, and got to engage with students as they shared their opinions and concerns.

The learnings from this debate have been instrumental as we develop our distribution models, as outlined on our Engineering and Model pages!


Act 3: Innovating with Empathy


Highlights from this Section:

  • We reflected on our values, and how to balance what we want to accomplish with what the community needs.
  • We include a summary of how all of our HP work influenced our decisions about the project, such as the delivery mechanism, decision to target multiple diseases, AAVP mechanism and distribution methods.
  • We summarize how our project is good for the world, and will have a positive impact on the affected communities.


Values

Throughout the course of this project, our team was sure to focus on values - both our own, and the values of others (as we explored in our socio-economic factors section). Through many long discussions with our team, we developed the following schematic to show the intersections and differences between our values, iGEM’s values, and the values of the communities affected by NTDs.

Throughout the iGEM cycle, we made sure to keep these values in mind as we worked on our project in all areas. From our conversations above, we learned how to emphasize the priorities of the affected communities the most, while also keeping in mind our own moral and educational values.



Integrating to Succeed:

Below are a few of the major points of how our human practices research and conversations shaped the development of our project.

  • From our conversations with researchers in the affected communities, we decided to use an oral delivery method as opposed to an injectable vaccine. An orally-given vaccine will facilitate distribution of our therapeutic, make it more attractive to affected individuals, and reduce the need for high-end medical facilities to administer the vaccine.
  • From our research, reflections and conversations, we decided to use the AAVP technology to drive our project. This will allow for prolonged storage of our vaccine at a wide range of temperatures, which make storage and distribution more feasible. We also modeled our distribution plans surrounding these discussions - more information on those can be found on our Engineering and Model pages!
  • In learning about the stigma and lack of awareness surrounding NTDs, we fueled our desire to pursue education about NTDs and synthetic biology as a whole as a major part of our project. For more information, please see our Education page!

Conclusion

Our team has made every effort to create a project that we believe to be good for the world. As a therapeutic, our goal is of course to help people who are impacted by Neglected Tropical Diseases, but beyond that we have also worked to educate the public, have informed conversations with stakeholders to guide our decision-making, and ensure that we are prioritizing the needs, values and beliefs of the affected communities.

“It’s such an important issue. I’m so glad that we had so many people willing to help us, and that we were able to learn from their help to create something that can have a true, sustainable impact.” - Sally Tsoi, HP Lead