Development and assessment of tailored illustrations to enhance community understandings of genetics topics

This community-driven study demonstrates that co-developing tailored, locally-grounded illustrations through iterative feedback effectively enhances engagement and understanding of abstract genetics concepts among the Orang Asli of Malaysia and the Turkana of Kenya.

The Gist

Imagine you are trying to explain how a smartphone works to someone who has never seen electricity, let alone a circuit board. If you hand them a technical manual full of words like "semiconductors," "bandwidth," and "transistors," they will likely feel lost, frustrated, and maybe even suspicious of your intentions.

This is exactly the challenge scientists face when trying to explain genetics (the study of DNA and heredity) to Indigenous communities who have been historically left out of these conversations or treated poorly by researchers in the past.

This paper is a story about how a team of scientists tried to fix that problem by changing the way they "spoke" to their neighbors. Instead of using a technical manual, they tried to draw a picture that made sense in the neighbor's own backyard.

Here is the breakdown of their journey, using simple analogies:

The Problem: The "One-Size-Fits-All" Suit Doesn't Fit

Scientists wanted to share their findings about genetics with two very different groups:

1. The Orang Asli: Indigenous people living in the rainforests of Malaysia.
2. The Turkana: Nomadic herders living in the dry, dusty landscapes of Kenya.

At first, the scientists tried to make a "universal" set of pictures. They drew generic human figures and used standard scientific diagrams. It was like trying to wear a suit that was tailored for a mannequin; it looked okay from a distance, but it didn't fit anyone's actual body.

What happened?

• The people in Kenya and Malaysia looked at the generic pictures and said, "These people don't look like us. These houses don't look like ours. This doesn't feel real."
• They felt disconnected. The pictures were too abstract, like trying to explain a storm by showing a picture of a cloud from a satellite map, rather than showing the rain hitting the ground.

The Solution: The "Tailor" Approach

The scientists realized they needed to stop being "broadcasters" and start being "tailors." They decided to make custom illustrations for each group, using things those communities already knew and loved.

The Process (The "Try-On" Phase):

1. Drafting: They drew the first set of pictures based on common questions people asked (e.g., "What is DNA?" or "What happens to my blood?").
2. The Fitting: They showed these drafts to the communities and asked, "Does this make sense? What's confusing?"
3. The Alterations: The feedback was gold.
   • The Kenya group wanted more realistic details.
   • The Malaysia group said, "Please show people wearing our traditional clothes, living in our bamboo houses, and playing our games." They also suggested using Durian fruit (a spiky, smelly, but beloved local fruit) to explain genetic diversity, because everyone knows that one tree can produce fruit that tastes slightly different.

The Result:
The scientists scrapped the generic "universal" version for the Malaysia group and created a custom-tailored set of illustrations.

• Instead of a generic human, they drew people with the specific hair textures and skin tones of the Orang Asli.
• Instead of abstract diagrams, they used the Durian fruit to show how genes create variety.
• Instead of a sterile lab, they showed the rainforest and traditional homes.

The Test: Did the New Clothes Fit?

After refining the pictures, the team went back to the Orang Asli communities in Malaysia with their new, custom-made illustrations. They held small group discussions and asked 92 people for their honest opinions.

The Findings:

• High Interest: 92% of the people said they were excited to learn more about genetics. They weren't scared; they were curious.
• Familiarity Wins: The pictures that looked like their lives were the most popular. When people saw their own environment in the drawings, they felt, "Ah, I understand this. This is about me."
• Confusion Happens: Some pictures were still confusing (especially one showing how different Indigenous groups around the world are related). This is normal! It's like trying to explain a complex recipe; sometimes you need to taste the dish a few times to get the flavor right.
• Education Matters: People with more formal schooling found it slightly easier to explain the concepts to others, but everyone benefited. Even those with no formal education felt the pictures helped them understand why scientists care about their blood.

The Big Lesson: Trust is Built in the Details

The most important takeaway from this paper isn't just about DNA; it's about respect.

Think of research like a conversation at a dinner party.

• The Old Way: The scientist sits at the head of the table, speaks in a language the guests don't understand, and hands them a menu they can't read.
• The New Way (This Paper): The scientist sits at the table, speaks the guests' language, serves food they recognize, and asks, "Does this taste right to you?"

By taking the time to listen, draw pictures that looked like the community's reality, and admit when a picture didn't work, the scientists built trust. They showed the community that they weren't just "subjects" to be studied, but partners in the conversation.

In a nutshell:
You can't explain the universe to someone using a language they don't speak. To share the secrets of life (genetics), you have to tell the story using the metaphors, images, and daily life of the people you are talking to. When you do that, the "abstract" becomes clear, and the "unfamiliar" becomes a friend.

Technical Summary

1. Problem Statement

Effective communication of genetics concepts is critical for ethical and collaborative anthropological genetics research, particularly with Indigenous populations. However, significant barriers exist:

• Abstract Nature of Concepts: Genetics involves invisible processes and technical jargon (e.g., DNA, chromosomes) that often lack direct linguistic equivalents in local languages.
• Historical Mistrust: Indigenous communities (e.g., Orang Asli in Malaysia, Turkana in Kenya) have historically faced exploitation, lack of transparency, and misuse of samples, leading to wariness of participation.
• Lack of Established Models: While images are a common tool for science communication, there are no widely adopted guidelines for developing them. Existing examples are often too technical, rely on Western-centric analogies, or lack iterative community feedback loops.
• The Gap: It remains unclear how to develop visual aids that are culturally resonant, how to iterate based on community feedback, and whether engagement varies across demographic factors like education, market integration, and sex.

2. Methodology

The study employed a two-phase, mixed-methods approach involving the Orang Asli (Indigenous peoples of Peninsular Malaysia) and the Turkana (pastoralists of northwest Kenya).

Phase 1: Iterative Development and Piloting (2022–2024)

• Question Selection: Seven frequently asked questions (FAQs) regarding genetics were identified from previous research (e.g., "What is DNA?", "Who has access to my DNA?").
• Initial Design: Nine "generalizable" illustrations were created using generic human figures and neutral backgrounds to appeal to both populations.
• Iterative Feedback:
  • Turkana (2022, 2023): Images were presented via live talks and videos. Feedback indicated a desire for more realistic imagery and less abstract depictions.
  • Orang Asli (2023, 2024): Feedback highlighted that generic images were not relatable. Participants requested imagery reflecting their specific environment (rainforest), lifestyle (traditional housing), and local biological examples.
  • Pivot: Based on feedback, the team abandoned the "one-size-fits-all" generalizable model in favor of community-specific illustrations. The final set focused exclusively on the Orang Asli context.
• Presentation Formats: Tested various delivery methods (live slides, pre-recorded videos, tablets, printed laminated sheets). Interactive, small-group discussions with printed materials were found to be most effective for engagement.

Phase 2: Evaluation (2025)

• Participants: 92 consenting adults from six Orang Asli villages.
• Procedure: Structured interviews were conducted using the finalized, Orang Asli-specific illustrations.
• Data Collection:
  • Quantitative: 8 yes/no questions assessing interest, perceived understanding, and willingness to recommend the materials.
  • Qualitative: Open-ended questions regarding favorite images, confusing elements, and key takeaways.
• Statistical Analysis:
  • Thematic Analysis: Inductive coding of open-ended responses to identify recurring themes.
  • Multiple Correspondence Analysis (MCA): Used to reduce dimensionality of categorical yes/no data and identify axes of variation in participant responses.
  • Regression Modeling: Binomial and linear models tested the association between demographic predictors (age, sex, education level, urbanicity score) and interview responses.

3. Key Contributions

• Methodological Framework: Demonstrates a successful co-creation model where scientific illustrations are not static products but evolving resources shaped by iterative community feedback.
• Cultural Specificity: Proves that "generalizable" scientific imagery is often less effective than locally grounded imagery. The study successfully replaced abstract concepts with culturally relevant analogies (e.g., using durian fruit varieties to explain genetic diversity and hair texture to explain heredity).
• Demographic Insights: Provides empirical data on how education, urbanicity, and sex influence the reception of genetics communication, challenging the notion of a uniform "public" understanding.
• Resource Availability: The study released both the generalizable and the specific Orang Asli illustration sets on GitHub, providing a template for other researchers.

4. Key Results

• High Engagement: 92% of participants expressed interest in learning more about genetics. 85% found the illustrations useful.
• Preference for Familiarity:
  • Favorite Image: Illustration B (depicting hair texture inheritance in a traditional rainforest setting) was the most preferred (38% of participants).
  • Reasoning: Participants preferred images reflecting their identity, daily activities, and local environment.
  • Confusion: The most confusing image was Illustration E (depicting global genetic variation), which was highly technical. Despite this, it was retained because participants felt it was important to see how their community fit into a broader Indigenous context.
• Knowledge Gains: Thematic analysis revealed participants gained awareness that:
  1. Blood contains biological information (DNA).
  2. DNA influences traits and health.
  3. Genetic variation exists between individuals and populations.
• Demographic Correlations:
  • Education: Higher education levels were nominally associated with better self-reported understanding and confidence in explaining the concepts to others.
  • Urbanicity: Individuals in less urbanized areas were more likely to report that the illustrations helped them understand why researchers study DNA, suggesting these materials are particularly effective for those with less prior exposure to scientific concepts.
  • Sex: Men were slightly more likely to report confusion with certain illustrations than women.
  • Internal Consistency: Strong positive correlations existed between self-reported understanding, engagement, and willingness to recommend the materials.

5. Significance and Implications

• Ethical Research Practice: The study reinforces that ethical engagement with Indigenous communities requires moving beyond standard informed consent to meaningful, ongoing communication. Visual aids are a critical tool for this, but only if they are culturally tailored.
• Beyond "One-Size-Fits-All": The failure of the initial "generalizable" images underscores that scientific communication must be context-specific. What works for one population (e.g., Turkana) may not work for another (Orang Asli) due to differences in lifestyle, environment, and cultural priorities.
• Trust Building: By using familiar imagery (e.g., local fruits, traditional housing) and addressing specific community questions, researchers can demystify genetics, reduce fear, and build trust.
• Future Directions: The authors suggest that while static images are effective entry points, future work could explore animated versions for complex processes, provided infrastructure allows. They also emphasize the need to evaluate whether these communication exercises lead to long-term trust in science.

Conclusion:
This paper establishes that iterative, community-driven development of tailored visual materials is a highly effective strategy for communicating complex genetics concepts to Indigenous populations. The success of the project relied not on the technical accuracy of the images alone, but on their cultural resonance and the willingness of researchers to adapt their materials based on continuous community feedback.