Summary: Intersectional Echoes ​
🎉 Welcome to our inclusivity page!
When inclusion becomes one-way, roles reduce diversity: scientist and patient, giver and receiver. Such lines, though subtle, keep many voices at the margins of science.And we wanted to make a difference.
Through an intersectional lens, we found shared needs where divisions once stood. By inviting diverse stakeholders to co-design, we began building shared agency.
Intersectional Echoes, to us, is not a checklist but a way of questioning— Not just “How can we help marginalized groups in science” but “How can participation itself create change?”
Our highlights ✨ ​
1. What systemic barriers did we identify?
We found that scientifically marginalized groups—such as people living with Epidermolysis Bullosa (EB)—often face three intertwined barriers: they are unseen, voiceless, and excluded from participation. We have discovered the potential for their intersectional identities to engage in scientific affairs.
2. How did we expand participation in science?
We co-created inclusive formats with EB patients, including sensory-friendly surveys, Photovoice storytelling, and immersive exhibitions. These initiatives helped transform participants from “research subjects” into co-designers and active collaborators, allowing their experiences to directly shape scientific inquiry.
3. How do we ensure dialogue and mutual learning?
Our approach is built on ongoing dialogue and negotiation with EB patients and fungus-sensitive communities. Their needs for fungal therapy have informed our experimental design, while their insights into sensory and physiological sensitivity helped improve the laboratory environment—benefiting other neurodiverse researchers as well.
4. What replicable outcomes have emerged?
We developed a series of transferable tools and methods: a sensory-friendly research toolkit, a post-event feedback and evaluation model, a collection of science posters, and the assistive software “ProtocolFlow”. These resources can be readily adapted by other teams.
“Intersectionality is a lens through which you can see where power comes and collides, where it interlocks and intersects. If we aren’t intersectional, some of us, the most vulnerable, are going to fall through the cracks."
-- Kimberlé Crenshaw
Our project focuses on the differentiation and evolutionary potential of fungal multicellular clusters. When conducting research on fungal infectious diseases, we recognize that, fungal challenges are not one-dimensional in real society,. People with different identities, bodily conditions, and social circumstances often bear intersectional pressures. Fudan iGEM 2025, through innovative inclusive practices, takes EB (Epidermolysis Bullosa, “Butterfly Children”) patients as an example to address the multiple barriers faced by populations troubled by fungi—being unseen, voiceless, and excluded from participation. Our aim is to co-create an inclusive scientific community, enabling more diverse voices to join future scientific planning and decision-making. Since nearly everyone may become susceptible to fungal infections, we envision building an inclusive scientific community that faces fungal challenges together.
0. Forming the theoretical framework ​
âś… In a nutshell: We aim to co-create an inclusive scientific community to address fungal challenges with joint effort.
0.1 Our initial framework and primary target group ​
Our social structure exhibits a profound similarity to the "multicellular yeast" model: the group relies on diverse individuals, and individuals, in turn, benefit from the group. However, while integrating into the collective, individuals also experience additional pressures that isolated individuals do not face. The inclusive initiatives we promote aim precisely to resolve this kind of structural pressure—precisely for this reason, our social advocacy and experimental research are fundamentally interconnected.
On the other hand, starting from the clinical connection between fungal infections and skin health, we have directed our attention to the community of patients with Epidermolysis Bullosa (EB). They not only endure a lifetime of suffering and the reality of no curative treatment but also face multidimensional barriers when participating in scientific research due to dual physical-psychological burdens and economic pressures. As a result, they fall into a state of "scientific voicelessness" within the scientific system—being overlooked, struggling to be heard, and facing exclusion.
Therefore, we propose the establishment of an interdisciplinary and inclusive scientific community methodology, aimed at breaking down the structural barriers to scientific participation. This approach seeks to systematically empower marginalized groups, enabling their experiences and voices to genuinely influence the agenda and direction of scientific research through effective expression and action.
The Intersection of Scientific and Social Problems ​
- Fungal infections are a widespread global health concern, potentially affecting almost everyone. Fungal diseases cause more than 1.5 million deaths each year and affect over 1 billion people[1]. For instance, dermatophytosis—the most common superficial fungal disease—affects 20–25% of the global population[2]. Within these broad populations, there exists a group who not only endure recurrent skin lesions but also face fungal infections as a severe complication: patients with Epidermolysis bullosa. They are known as "Butterfly Children" in China because their skin is as fragile as a butterfly's wings.
- Epidermolysis bullosa (EB) is a group of rare genetic disorders characterized by profoundly fragile skin. Clinically, individuals with EB experience chronic blistering and wound formation, with certain subtypes also involving mucous membranes and other organs. As a result of this loss of the skin’s natural protective barrier, patients are highly vulnerable to infections.
- Among these, we have identified fungal infections as a critical concern for EB patients, given their persistent skin breakdown and compromised immunity. This vulnerability is exacerbated by the disease's lifelong course and the lack of curative treatments, which together intensify the risk of antifungal drug resistance and underline the pressing need for better therapeutic strategies.
Systemic Scientific Barriers ​
- Financial strain arises from the high cost of ongoing medical care, compounded when parents or caregivers must leave their jobs to provide support, exacerbating economic hardship[3]. The relentless physical and psychological demands of daily wound management lead to profound exhaustion, making sustained concentration in high-intensity fields like scientific research particularly challenging. Furthermore, inadequate accessibility support in educational institutions often forces students with EB to discontinue their studies, while pervasive social stigma and low expectations further limit opportunities for advanced scientific training and professional participation. These multifaceted barriers—physical, emotional, socioeconomic, and societal—highlight the urgent need for integrated support systems and increased awareness to improve the lives of those affected by EB.
Three layers of structural barriers in science ​
Rare disease patients encounter three layers of structural barriers in science. These barriers not only exacerbate their difficulties but also deprive science of valuable perspectives and wisdom. We describe this condition as “scientific voicelessness”, which manifests in three dimensions:
Unseen: Systematic Neglect in Research Rare disease communities are often marginalized in biomedical research. With small patient populations and high research costs, their disease mechanisms and therapeutic needs rarely become funding or pharmaceutical priorities. As a result, many rare diseases remain “unknown diseases,” blank spaces on the scientific map.
Voiceless: Absence of Communication Channels Even though patients possess deep experiential knowledge of their conditions, scientific systems lack effective mechanisms to incorporate this insight. Traditional scientific language, standardized questionnaires, and clinical endpoints often fail to capture lived experiences. Their bodily sensations and daily struggles cannot easily be translated into “valid data,” leaving them excluded from scientific narratives.
Excluded: The Divide Between Science and the Body Scientific practice usually assumes researchers have “standard” bodily functions. Yet the lived realities of rare disease patients—frequent care routines, physical limitations, mobility challenges—do not fit the rigid, high-intensity environments of laboratories. They face both physical and institutional exclusion from participating in study design, data collection, and even public science activities.
0.2 The three-step model: Visibility → Empowerment → Involvement ​
To address these barriers, we propose the Visibility → Empowerment → Involvement model of inclusive science.
- Visibility serves as the emotional and cognitive foundation of an inclusive community.
- Empower expression allows marginalized groups to articulate needs overlooked within current scientific structures.
- Involvement emphasizes the co-creative processes that drive the building of inclusive scientific communities.
Visibility creates a trusted environment for expression; adequate space for expression provides rich, equitable materials for dialogue; and the creative processes of problem-solving generate more diverse and profound narratives, which in turn further enhance visibility and recognition in the scientific community. Step by step, these interactions enable structural barriers in science to be gradually reshaped.
Through focusing on EB patients’ unique situation in the context of fungal challenges, Fudan iGEM 2025 seeks to explore new approaches to building inclusive scientific communities—bringing rare disease groups into both the narratives and practices of science.
1. Visibility: Ensuring marginalized groups receive attention. ​
âś… In a nutshell: Enable rare disease patients to increase visibility by presenting themselves as artists.
To address the issue of invisibility and bring the existence and needs of EB patients into the view of the public and the scientific community.
1) Art charity sale: Position patients as artists rather than merely patients, thereby discovering their intersectional identities.
2) Problem identification: Focusing on a single group easily creates a sense of difference. Therefore, the aim is to design intersectional activities that reduce pressure and foster multidirectional dialogues.
3) Classification and data visualization: Demonstrate the intersectionality between EB patients and other groups (such as diabetic foot patients, pregnant women, athletes, etc.) in relation to fungal problems.
Propose a framework grounded in the principle of intersectionality.
To break the isolation of labeling and to seek modes of expression for rare disease patients within the shared identity of being "those troubled by fungal infections".
A Public Science Art Pop-up with a Co-creation Charity Sale.
1.1 Art Pop-up and Co-creation Charity with EB Patients ​
Motivation: Use Art as a Tool for EB Patient Recognition ​
In our initial attempts to engage with the EB community, we realized the difficulty of implementing the grand goal of co-creating an inclusive scientific community on a practical level. One unavoidable fact is that EB patients face multiple barriers in the scientific domain. They possess the intellectual capacity to deeply engage in scientific work, just like anyone else, but the complications of their illness make even daily life difficult. It is not a lack of willingness to enter science, but rather that their motivation to participate is suppressed by both illness and social constraints.
Given this systemic dilemma, our first step was to draw public attention to their presence and to eliminate their invisibility within science.
During the process of inviting patients to participate, we noticed that many expressed an intangible psychological distance from the scientific community. It became urgent to find a mode of participation that could empower them to exercise their agency. A drawing by 16-year-old JING JING inspired us — a Genshin Impact fanart. This revealed dimensions of their identities and aspirations beyond being “patients.”
This insight encouraged us: although the division between EB patients and non-EB patients exists, common ground can still be found on other levels to unite us. Such psychological recognition is the first step to connecting marginalized groups in science with STEM practices.
Details ​
- Art as a medium
The campus-based “Butterfly Children Charity Sale” was our first attempt. The event combined a public-welfare + commercial model, offering over 20 charity products (postcards, bracelets, knitted items, cardholders, paintings, etc.) created by patients and their families. It attracted over 200 participants .
Through this, we hoped rare disease patients could act as knowledge producers, actively participating in the process and generating income through their creative work — transforming one-way assistance into two-way healing.
- Q&A Posters
Before the event, our iGEM team had conducted three months of systematic fieldwork. We contacted a well-known EB patient blogger, "Prince Superman," whose documentary received over 25 million views. With his support, we invited over 10 EB families to join. To break down biomedical knowledge barriers, the team designed Q&A posters that translated scientific information into accessible language, aiming to broaden public engagement.
- Personal Story Tag and Price Contrast Cards
“I chose this painting because it feels really realistic! I feel like the little girl in the painting, lively and cute yet elegant. Next to 'me' is 'my kitten', which is smart and clever while still charming."
-- EB patient HanJing
In our pop-up，we invite the patients to briefly introduce their artwork with a personal story tag, offering a glimpse into the creator’s inner world and transforming the pieces from mere objects into powerful narratives of identity and self-expression.
Furthermore, to deepen public understanding of the daily realities for rare disease patients, we designed price comparison cards. For example, one card highlighted that while a postcard print of a patient's artwork was priced at just 3 RMB, a single daily medical dressing they required cost 100 RMB. This stark contrast help the participants to grasp the profound financial challenges faced by EB patients.
1.2 Improving our Theoretical Framework: Intersectionality ​
“Intersectionality has given many advocates a way to frame their circumstances and to fight for their visibility and inclusion."
-- Kimberlé Crenshaw
Initially, we sought to focus on a single target group to quickly identify needs. However, this approach risked unintentionally reproducing the same labeling pressures that patients face in daily life.
This attempt — foregrounding the identity of artists instead of patients — revealed that conscious intersection and blending of identities can dilute the psychological burden created by singular identity markers. It also fosters a more holistic understanding of EB patients by the public.
On this basis, Fudan iGEM 2025 proposes an intersectional framework for building an inclusive scientific community.
Intersectionality, a concept introduced by scholar Kimberlé Crenshaw, posits that oppression and privilege are not determined by a single identity factor (such as gender or race), but by the overlapping and interacting effects of multiple identities (race, gender, class, disability, sexuality, etc.)[4]. Intersectionality was initially introduced as an analytical framework to understand how interconnected and mutually constitutive categories like race and gender compound inequalities for minority women. It has since been expanded to conceptualize the marginalization experienced by minority groups at the intersections of race, gender, sexual orientation, class, and other identities[5].
While we also employ the framework of intersectionality, our emphasis is distinct. We argue that while intersecting barriers undoubtedly create and reinforce inequality, these points of intersection also represent potential sites for building diverse partnerships. By uniting individuals and groups who share similar challenges, we can forge broader coalitions to develop collective solutions.
Inspired by this, we formulated the Visibility → Empowerment → Involvement model, emphasizing respect for participants’ multiple identities throughout the process, and using intersectional identities to establish connections across broader stakeholders. This approach expands the reach of inclusive science.
Furthermore, the intersectional perspective provides a cost-effective solution to the challenges rare diseases face — namely, dispersed populations and low patient numbers/high research costs. By “seeking overlaps”, we can amplify alliances and increase collective power.
2. Empowerment: Mapping the Unspoken Truths. ​
✅ In a nutshell: Through sensory-friendly design, people living with fungal challenges can express struggles that were once unspeakable — turning silent experiences into voices that matter.
To address the voiceless problem by providing appropriate tools that help scientifically marginalized groups articulate their own scientific experiences.
1) Through classification and data visualization, demonstrate the intersectionality of EB patients with other groups (e.g., diabetic foot patients, pregnant women, athletes) regarding fungal issues.
2) Develop a Participatory Mapping Toolkit to guide them in describing care-seeking pathways, pain points, and medication-related challenges.
3) Design sensory-friendly research methods: using metaphors, drawings, and embodied descriptions to help participants articulate experiences that are often "hard to put into words."
4) Identify barriers in fungal treatment from patient narratives, and reveal misunderstandings caused by the lack of integration with the broader scientific community.
5) Lay the groundwork for the next stage of activities that emphasize dialogue.
Create channels that translate the unique experiences of scientifically marginalized groups, uncover authentic needs, and provide a foundation for designing subsequent activities.
Participatory Mapping Toolkit
2.1 In-depth interview and Ethnographic fieldwork with patients ​
Motivation: Breaking the binary divide between "healthy" and "ill" ​
Building on insights from our first activity, we aimed to invite individuals who share similar lived circumstances with EB patients at certain moments, in order to reduce the inequitable pressure produced by the binary divide between “healthy” and “ill.” Starting from our project’s focus on fungal issues and based on literature review[6], we delineated a broad group of “fungus-susceptible individuals.”
| Category | Main populations | Common fungal problems |
|---|---|---|
| Immunocompromised | HIV/AIDS, transplant recipients, chemotherapy patients | Candidiasis, cryptococcal meningitis, invasive aspergillosis |
| Underlying conditions | Diabetes, eczema, pulmonary diseases, EB | Foot infections, skin mycoses, aspergilloma |
| Life stage | Infants, elderly, pregnant women | Oral thrush, diaper rash, onychomycosis, vaginitis |
| Environmental/occupational | Farmers, workers in humid environments, people in poor housing | Respiratory fungal infections, athlete’s foot, jock itch |
| Lifestyle/behavioral | Poor hygiene, antibiotic misuse, pet ownership | Dermatophytosis, candidiasis, tinea (e.g., cat ringworm) |
In other words, while our research began with EB patients, it soon expanded to include a broader range of individuals susceptible to fungal infections. More importantly, we discovered that groups like an HIV patient, a diabetic with foot ulcers, a young athlete with athlete's foot, or a pregnant woman with vaginitis — despite their seemingly different identities — are all, at a deeper level, “allies affected by fungal problems.” They share with EB patients the intersecting identity of living with a recurrent, chronic condition compounded by other vulnerabilities.
Details ​
Through broad recruitment, we identified 10 individuals in Shanghai who had sought medical care due to fungal susceptibility factors. This included:
those with confirmed fungal infections such as aspergillosis, jock itch, athlete’s foot;
those with underlying conditions predisposing them to fungal complications (EB, diabetes, eczema);
children and elderly individuals with lower immunity;
those living or working in humid environments.
Preliminary discovery ​
We first conducted a quantitative questionnaire survey, Participants answer the following questions using a slider with a score of 0 to 5. The key findings are summarized below:
| Question Average(0=Very Unlikely/Bad,5=Very Likely/Good) | Average Score |
|---|---|
| 1.Overall, how would you rate your previous healthcare experience related to fungal issues? | 3.41 |
| 2.As someone affected by fungal issues, I believe my voice is important in the scientific field, and I am willing to participate in it. | 4.31 |
| 3.As someone affected by fungal issues, how important is it for you to participate in and contribute to scientific endeavors? | 2.91 |
| 4.I believe the complexity of symptoms and physical sensations I experienced are not adequately captured in current healthcare processes, scientific research, and drug development. | 1.93 |
| 5.In my studies, work, and daily life, I have felt misunderstood, judged, or needed to hide my physical condition due to fungal issues in order to participate in certain activities. | 2.20 |
This table contains both positively and reverse-scored items. Specifically: Items 1-3 are positively scored, where a higher score indicates stronger agreement or a more positive evaluation of the healthcare experience. Items 4 and 5 are reverse-scored, where a higher score indicates greater dissatisfaction with the current situation or more frequent negative experiences. Results showed that:
- The majority had experienced misunderstanding and stigma due to fungal problems. (Q5=2.20)
- Most participants felt that medical experiences strongly influenced their willingness to seek care, and that current clinical experiences required improvement. (Q1=3.41，Q4=1.93)
- All participants rated their level of participation in science lower than their perceived importance in science. (Q2=4.31，Q3=2.91)
This highlights that “fungus-susceptible groups,” including EB patients, face barriers of scientific voicelessness. Specifically, their experiential knowledge, rooted in lived medical encounters, is systematically excluded from knowledge production when it does not conform to dominant discourses (e.g., technical biomedical language).
Therefore, our goal is to empower fungus-susceptible individuals to articulate their valuable scientific experiences in their own language, and to create pathways for translating and amplifying these voices.
Sensory-friendly research design ​
Through literature review and our previous questionnaire activities, we identified limitations in conventional healthcare surveys that rely predominantly on quantitative methods[7]. For instance, several participants who reported in the quantitative questionnaire that "they had not been treated unfairly due to fungal issues" voiced related concerns while sharing their doodles. Participants expressed feeling pressured when conveying negative feedback in standard surveys.
For populations affected by fungal conditions—who tend to be more environmentally sensitive and psychologically vulnerable to contextual stress—a research approach that reduces such pressure is essential to help them articulate those "unspeakable truths." Therefore, we designed a Participatory Mapping & Illness Experience Atlas as a sensory-friendly research activity. Participants—including EB patients—were invited to use one medical encounter as an example, and to describe their journey through care not only in words, but also through drawings, symbols, and embodied metaphors.
Building on quantitative survey findings regarding barriers in care, we asked participants to sketch pathways to hospitals. This method:
- Accommodated participants who cannot read or write.
- Surfaced intangible local knowledge and place-based needs (often overlooked in surveys)
- Generated feedback relevant to urban planning and patient navigation systems
From these narratives, we found that access to accurate information was the most critical issue:
- Hospital information is fragmented, lacking patient-centered guidance.
- Social media misinformation and misleading advertisements further delay timely care.
Participants expressed appreciation for our sensory-friendly approach.
- Using colors helped them express emotions more accurately.
- Doodles triggered rich memories and details.
- Metaphors and embodied descriptions gave form to previously “unspeakable” experiences.
This enabled us to develop a Sensory-Friendly Research Toolkit, which can be applied in broader contexts.
Two powerful moments ​
- A lady undergoing over a year of antifungal treatment faced workplace discrimination and nearly lost her job. When asked, “If you could describe fungal infection with one color, what would it be?” she answered:
“I would choose green, a symbol of hope—like wild grass that survives the fire, growing again when the wind blows.”
- When a team member expressed to a 14-year-old EB patient our hope that we hadn't inadvertently offended any patient identities through our activities, she demonstrated a maturity far beyond her years. She comforted our teammate by saying they had already done an excellent job, and went on to share her own experiences in the hospital:
"I was super bored one night in the hospital, so I went to the nurses' station and sang for them. I even held a small concert right there, haha!"
Both accounts challenge simplistic narratives of “patient as passive sufferer.” They remind us to listen to how individuals actively reinterpret, cope with, and reshape the meaning of illness in their lives.
This case underscores the core advantage of sensory-friendly methods: creating a safe space for complex, even contradictory experiences. Tools like colors and doodles allowed us to capture dialectical narratives of illness beyond binary framings, inspiring healthcare practices rooted in respect for patients’ interpretive agency.
Conclusion ​
From this study, we learned that fungus-susceptible individuals demand more convenient antifungal treatments. Topical medication was reported as inconvenient and had low adherence, while participants called for faster-acting oral drugs with greater resistance profiles. EB patients, in particular, emphasized the need for smaller pills due to esophageal strictures. These insights informed the experimental antifungal drug screening part of our project.
In terms of clinical experiences, many participants reported diverse entry points (e.g., dermatology, pulmonology, hematology), leading to delays in fungal diagnosis and treatment. Poor efficacy further reduced willingness to seek care, creating a vicious cycle.
Key barriers identified include:
- Unclear guidance during medical visits
- Stigma and misunderstanding
These insights directly shaped our follow-up activities: Photovoice (“Image-based Storytelling”) and a Co-Creation Art Exhibition, designed to amplify marginalized voices in science and reimagine inclusive community-building.
3. Involvement: Let dialogue between the vulnerable and researchers take place. ​
âś… In a nutshell: Foster multi-stakeholder dialogues on science to bridge barriers and make participation more accessible.
To address the excluded challenge by creating opportunities for multi-stakeholder dialogue on scientific issues.
1) PhotoVoice: Enable patients to narrate their everyday lives through images, while inviting researchers, doctors, and the public to engage in dialogue about improving medical experiences identified in the previous section.
2) Co-Creation Art Exhibition: Simulate laboratory settings (e.g., operational difficulties, sensory barriers) to allow the public to experience the challenges of EB patients, while listening directly to their narratives in the exhibition.
3) Improved Feedback Model
Marginalized groups shift from being mere "subjects of research" to "voices in dialogue," fostering mutual understanding and cross-building of scientific issues with society.
- Improved Feedback Model
- Toolkit: Ten Questions for Post-Activity Reflection
3.1 Facilitating Dialogue: PhotoVoice ​
Motivation: Use participatory research method to empower our target group. ​
The "Visibility" and "Empowering Expression" activities we carried out earlier mainly focused on us as the leading role to promote the construction of an inclusive scientific community. Yet this is not enough. More importantly, marginalized groups themselves must directly and proactively participate in scientific affairs. Moving from the margins to the core is not instantaneous—a STEM professional may require years or decades of training. While supporting groups with barriers to access core scientific careers, it is equally important to empower marginalized groups to participate in inclusive science governance, enabling them to take a firm first step into shared decision-making.
Details ​
PhotoVoice is a participatory research method that invites participants to express their experiences through photographs and narrate the stories behind them[8]. We combined this method with an intersectionality lens, inviting EB patients, fungus-susceptible individuals, medical researchers, psychology experts, and photographers.
We worked with Dr. Zihan Zhou, a psychologist with a STEM background, to design our approach, and also promoted these ideas at the campus mental health center. You can click here to view the guidance manual and outcome report of our PhotoVoice this time.
Structured Feedback and Dialogue ​
The PhotoVoice workshop unfolded around three progressively layered themes:
- Rooms and Windows — Exploring how spaces (workplace, community, hospital) shape our experiences and identities.
- Cocoons and Spotlights — Using images to capture the dual faces of illness and science, reflecting on personal struggles in interacting with medicine and research.
- Healing and Recovery — Focusing on emotional and humanistic support beyond biomedical treatment, and exploring possibilities of being “healed” in body and mind.
After each theme, we implemented a structured feedback mechanism to ensure every participant’s voice was heard. Guided by prompts such as “I feel that…” or “This reminds me of…”, the discussion emphasized empathy and understanding rather than evaluation, enabling deep exchanges.
During this process, participants’ diverse identities shaped distinct perspectives on the same scene. For example:
- An ER head nurse described using the hospital's Rainbow Passage during a night shift to transfer a patient to the ICU.
- A surgeon reflects on the story of their young patient: bearing witness not just to the child's medical journey through multiple visits, but to their personal growth.
- A patient voiced frustration and fear about their chronic skin condition and turned to DeepSeek for comfort and support.
- An EB patient, however, described the hospital as a “familiar space,” bringing her warmth and safety.
This dialogue naturally extended into broader discussions of the boundaries of science and life education, enabling mutual understanding. Patients integrated into the wider community in a safe atmosphere, while doctors and researchers gained greater awareness of other stakeholders’ perspectives—making them more conscious of inclusivity in daily practice.
Collective Wisdom: The “Ideal Solution” ​
The workshop climaxed in a co-creation exercise based on medical settings. Drawing from our earlier participatory mapping findings, we simulated a “Shanghai hospital waiting hall” and introduced specific challenges .These barriers stem from the real needs identified through the "sensory-friendly research" we conducted in the previous section.
"Ideal Solutions" from Collective Wisdom ​
- Adopt soft color schemes for waiting halls.
- Add AI navigation/voice registration services to assist elderly patients.
- Set up children’s interactive corners to ease waiting anxiety.
- Optimize space zoning and ground guide routes, while reducing noise and chaos.
- Provide smooth, low seats to support older adults and children.
Participants brainstormed improvements to color, lighting, seating, and signage systems, eventually forming **a collectively negotiated ideal solution. **We then created a redesigned hospital space plan and shared it with earlier mapping participants, inviting them to evaluate how well it addressed their concerns. Most of the people who participated in the previous round of activities gave our plan a good review, believing that it would to some extent enhance their willingness to seek medical treatment.
We also consulted Tang Xirong, Deputy Chief Architect and Director of the Medical Institute at Shanghai Architectural Design & Research Institute Co.Ltd. She endorsed our core approach—integrating AI-guided navigation and digital concierge services as emerging trends—alongside the philosophy of creating "less clinical, more social" healthcare spaces. She also offered expert recommendations: 1) prioritizing antimicrobial upholstery for seating, 2) introducing micro-environments such as small atriums and play corners, and 3) ensuring visual designs prioritize the needs of elderly users.
This exchange highlighted the complexity of real-world implementation. It also revealed that long-term and sustained community engagement is essential, beyond one-time events. To support this, we developed “Ten Questions for Reflection after Inclusive Science Community Activities”, helping us and future practitioners sustain improvement.
Establishing Feedback Mechanisms ​
Did this activity help you feel that people with your background/experience are seen in science discussions?
Were your personal experiences treated as valuable contributions (beyond "storytelling")?
Did the provided methods (art creation, mapping, group discussion) allow you to express yourself more authentically than traditional surveys or interviews?
Did you feel you could articulate otherwise "unspeakable" experiences (pain, embarrassment, inconvenience)?
Did you feel truly listened to and understood—rather than merely pitied or judged?
To what extent did the activity foster equal dialogue across backgrounds (patients, scientists, students) rather than one-way transmission?
Did your contributions spark new ideas or actions from others?
Do you consider the outcomes (artworks, question lists, design proposals) as co-created by all, not just by organizers?
Did the activity change how you see your role in science (e.g., from "research subject" to "co-researcher" or "advisor")?
Based on this experience, would you feel confident participating in deeper collaborations (e.g., co-designing experiments, reviewing research proposals)? Why or why not?
Conclusion ​
This multi-stakeholder dialogue not only helped us better understand the real needs of fungus-susceptible groups and provided gentler, more open channels for expression, but also encouraged underrepresented groups in science to speak up. It fostered dialogue across stakeholders, reduced misunderstandings, and strengthened shared belonging.[9]
Most importantly, participants transformed from “respondents” into “co-designers”. Instead of us doing for them, they exercised agency in shaping scientific dialogue and public affairs. Dialogue not only empowered expression and eliminated misunderstandings—it also functioned as an evaluative feedback mechanism, helping us reflect and improve upon previous activities.
3.2 Co-Creation in Action: The Art Experience Exhibition ​
Motivation: Promote synthetic biology knowledge with our target ​
The “Fingertip Warmth · Science in Healing Together” art co-creation exhibition was not an isolated attempt, but rather an iteration and elevation of our previous cycle of Visibility → Empowerment → Involvement.
In the Art Pop-up and Co-creation Charity with EB Patients, by inviting patients to appear as “artists,” we discovered their intersectional identities beyond illness. After subsequent research and dialogue activities that promoted expression, we reflected on the shortcomings of our first visibility event. We realized the need to increase the leadership of EB patients in activities, transforming their stories into tangible, publicly impactful expressions.
Details ​
Restricted Movement Experience Zone: Fostering Understanding through “Inconvenience” ​
To go beyond passive observation, we designed an interactive experience. Visitors wore fingerless rubber gloves and were asked to perform the task of pipetting from a centrifuge tube.
This setup simulated the everyday challenges faced by EB patients—fragile skin and restricted joint mobility—and the barriers these bring to scientific work. After the experience, participants were encouraged to reflect on the limitations embedded in the “standard researcher” model of science.
Exhibition Area: A Distant Yet Reciprocal Dialogue ​
This space showcased the self-initiated expressions of the patient community. We exhibited artworks, beaded jewelry, diamond paintings, and other crafts created by EB patients, alongside their narratives.
After having experienced the difficulties of EB patients firsthand, visitors could approach these works with deeper resonance. Participants were invited to write messages on sticky notes and place them beneath the respective artworks. Later, these notes were mailed back to the corresponding EB patients, establishing a reciprocal dialogue between creator and audience.
Conclusion ​
Through the method of artistic co-creation, we explored a more intersectional pathway. When rare disease communities appear as “creators” and “curators”, their expression is no longer confined to narratives of illness. Instead, it encompasses aesthetic sensibilities, craftsmanship, and reflections on life.
Participants entered not as “rescuers” or “observers,” but as art appreciators, story listeners, and co-creators. The illness experience was not erased, yet it was no longer the sole center of interaction—it became one among many human experiences, naturally interwoven with other dimensions of identity.
This shift in identity helps dissolve the binary opposition between “patients” and “non-patients”, creating a more equal and freer dialogue space.
It suggests that true inclusivity does not lie in designing a “perfect solution” for a specific group, but in creating ecosystems where each person can participate as a complete, multifaceted individual.
Future inclusive practices should focus more on creating “points of identity intersection”, where people connect naturally through shared interests, co-creation, and collective concerns. In this way, inclusivity transcends labels, enabling deeper recognition and understanding.
4. Building an inclusive scientific community: Learn from the margins. ​
✅ In a nutshell: Our dialogues with marginalized groups have deepened our understanding of intersectionality in scientific research, inspiring the creation of ProtocolFlow and our lab mental health initiatives — bringing the spirit of inclusivity back into the scientific community itself.
We integrate insights from marginalized groups into the design of more inclusive laboratories and scientific practices.
- Develop laboratory-assistive software
- Launch an inclusive laboratory initiative - Conduct reflection and long-term planning
Summarize a transferable methodology: building inclusive scientific communities through the lens of intersectionality.
1) Laboratory-assistive software — ProtocolFlow
2) Promotional Campaigns with Weekly mental health checklist and guidance poster for laboratories
4.1 Laboratory-assistive software — ProtocolFlow ​
Motivation: Reflection on the scientific community ​
During our PhotoVoice dialogues, we invited a researcher with a history of fungal infections to share their lived experiences in the lab. They described the need to conceal their condition to avoid stigma, the frustration of making mistakes under sensory overload, and the worsening of their illness due to workplace stress.
This helped us realize: inclusivity in science is not only about integrating marginalized groups into research, but also about safeguarding the well-being of researchers themselves. We heard similar accounts from scientists, clinicians, and technicians, who work under high precision and high pressure while struggling with sensory sensitivities (e.g., to equipment noise or chemical odors), leading to anxiety and burnout.
These experiences resonated with our concerns for fungal-vulnerable populations, and improvements in this area would simultaneously reduce the psychological burden faced by other marginalized groups, such as EB patients, when engaging in research.
Importantly, the participant’s dual identity as both a researcher and a patient embodied an intersectional position, reflecting our core framework: individuals’ needs and struggles are fluid and overlapping. Inclusivity in science should not be seen as a “special demand” of marginalized groups, but as a collective benefit for everyone involved in scientific practice.
Details ​
Try ProtocolFlow at https://protocolflow-290e68.igem.wiki/
Source code at https://gitlab.igem.org/2025/fudan/-/tree/main/protocolflow
Core Functions ​
Our laboratory-assistive web tool ProtocolFlow is not merely an efficiency software, but a support system embedded with the ethos of inclusivity. Its core functional design directly responds to the needs revealed through our research and dialogues with individuals affected by fungal conditions:
- Visualized Experimental Guidance
- Function: Users can import or write their own experimental protocols, which the software automatically parses into a clear, visual step-by-step flowchart. Each step is accompanied by a progress bar, estimated duration, key precaution notes, and corresponding tool components. At the end, a tagged experimental report can be generated.
- Design Rationale: This reduces the cognitive load and anxiety caused by lengthy, text-heavy instructions, alleviating psychological pressure for lab members susceptible to fungal infections. It also helps experimenters with attention deficits or reading difficulties to better grasp both the overall workflow and the details. Built-in widgets such as timers and calculators minimize task-switching and reduce the risk of errors.
- Built-in Mental Health Self-Assessment Module
- Function: After completing an experiment, the software prompts the user to record their current mood via quick options, and guides them to a self-assessment questionnaire for stress evaluation. All data remains private to the user, and results are accompanied by stress-relief suggestions based on principles of Cognitive Behavioral Therapy (CBT).
- Design Rationale: This normalizes and destigmatizes attention to mental health, encouraging experimenters to proactively monitor their own condition and prevent the accumulation of chronic stress. It echoes our focus on supporting the whole person rather than treating them as “research machines.”
Initial Validation ​
In a two-week pilot with 30 researchers, we collected encouraging quantitative feedback:
- 93% found the visualized workflow effective in reducing anxiety.
- Preparation time dropped by ~15%, and error rates caused by step confusion decreased by 40%.
- 87% reported the mental health prompts helped them “pay more attention to their emotional state,” and 70% tried at least one suggested stress-relief strategy.
These results suggest that our tool not only improves efficiency but also meaningfully enhances researcher well-being. In today’s climate of rising concern over mental health in science, inclusivity efforts like this can strengthen the resilience of research.
4.2 “Lab Mental Health Week” check-in campaign ​
The former results collected in ProtocolFlow inspired us to launch a “Lab Mental Health Week” check-in campaign, complete with posters that teams can download and use to foster collective awareness and care.
From May to September, we have continued our science communication efforts on mental health in the laboratory setting on our social media, proposing actionable recommendations and establishing it as a long-term initiative.
4.3 A Methodology for Inclusive Scientific Practice into a sustain cycle ​
Core Principle: Sustainable inclusivity stems from responding to the most marginalized and sensitive needs, which ultimately benefits all participants in science.
Practical Pathway of Intersectionality:
- Visibility: Identify individuals around you who face barriers in science; amplify their presence.
- Empowerment: Use sensory-friendly and respectful methods to understand their needs, helping their voices enter scientific discourse.
- Involvement: Co-create with these groups on shared scientific issues, engaging relevant stakeholders.
- Feedback Loop: Insights from co-creation feed back into visibility efforts, forming a cyclical and iterative practice model.
Transferable Outcomes:
- Inclusive Practice Toolbox:
- For promoting popular science: A poster about the rare disease Epidermolysis Bullosa (see Q&A Posters section)
- For practical activities: Sensory-Friendly Research Toolkit
- For feedback: Ten Post-Event Evaluation Questions (see Establishing Feedback Mechanisms section)
- Technology Empowerment: Laboratory-assistive software prototype ProtocolFlow Live Demo and gitlab.
- Methodological Innovation: An operationalized, stepwise framework of "intersectionality in practice"
Conclusion: Forming a replicable, scalable, self-evolving cycle ​
Based on systematic literature review and preliminary field research, we have not only diagnosed three key structural barriers but also designed targeted solutions:
| Barrier Type | Research Methods | Solutions |
|---|---|---|
| Invisibility | Literature analysis, interviews with patient organizations | Art charity sales, intersectional identity displays |
| Inexpressibility | Quantitative surveys + sensory-friendly research | Participatory mapping, color-metaphor expression tools |
| Inability to Participate | In-depth interviews, participatory observation | PhotoVoice, co-creation workshops |
In today’s increasingly segmented society, people are routinely categorized as “children,” “elders,” “healthy individuals,” or “disabled populations.” Such labels—though administratively convenient—make cross-group understanding more difficult. Public speech and participation in science often remain reserved for the so-called “healthy,” pushing others further to the margins.
Our Visibility–Empowerment–Involvement cycle seeks to challenge this divide. Instead of reducing people to abstract categories, we restore the fullness of each participant’s multi-identity—as a researcher, a patient, an artist, a parent, or more.
A truly inclusive scientific community should not present people as fixed, single-identity figures. Rather, it must embrace individuals’ complexity and plurality, transforming them into genuine agents of change. Such a community becomes a catalyst for dialogue, mutual understanding, and systemic transformation.
Structural change is hard, but it begins with localized, lived efforts of inclusive community-building.
Nonetheless, we still believe that any time you can give will make a difference.
References ​
Brown, G. D., Denning, D. W., Gow, N. A., Levitz, S. M., Netea, M. G., & White, T. C. (2012). Hidden killers: human fungal infections. Science Translational Medicine, 4(165), 165rv13. DOI: 10.1126/scitranslmed.3004404 ↩︎
Havlickova, B., Czaika, V. A., & Friedrich, M. (2008). Epidemiological trends in skin mycoses worldwide. Mycoses, 51(Suppl 4), 2-15. DOI: 10.1111/j.1439-0507.2008.01606.x ↩︎
Managing wounds in patients with epidermolysis bullosa. (2020). Wounds UK, 16(4), 30–35. https://wounds-uk.com/wp-content/uploads/2023/02/c3ed2f932bfe8bf664b7a5af81b2857b.pdf ↩︎
Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. In K. T. Bartlett & R. Kennedy (Eds.), Feminist Legal Theory (pp. 57–80). Routledge. ↩︎
Kozlowski, D., Larivière, V., Sugimoto, C. R., & Monroe-White, T. (2022). Intersectional inequalities in science. Proceedings of the National Academy of Sciences, 119(2), e2113067119. DOI: 10.1073/pnas.2113067119 ↩︎
The landscape for rare diseases in 2024. (2024). The Lancet Global Health, 12(3), e341.DOI:10.1016/S2214-109X(24)00056-1 ↩︎
Johnson, D. S., Bush, M. T., Brandzel, S., & Wernli, K. J. (2016). The patient voice in research—evolution of a role. Research Involvement and Engagement, 2, Article 6. DOI: 10.1186/s40900-016-0020-4 ↩︎
Photovoice.org. (n.d.). Participatory photography. Retrieved October 26, 2023, from https://photovoice.org/participatoryphotography/ ↩︎
NIHR. 2024, April. Starting Out Guide - Why and how to get involved in research. Retrieved from https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/resources/ (Accessed on: 2025/10/4) ↩︎
