From the information gap to informed consent: what nearly 20 studies reveal about the involvement of communities in gene drive research

This version (Version 2) was created on 26 March 2025

1. Addressing the controversies in gene drive research

Few biotechnologies in recent years have sparked as much debate as gene drive. On one hand, it holds the promise of transforming disease control and biodiversity conservation. On the other, it raises profound ethical, ecological, and governance concerns. Who should decide if and when it is deployed? This question is not merely technical but deeply social and political. The involvement of local communities, policymakers, and scientists in decision-making is paramount to ensuring that gene drive research progresses responsibly (Boersma et al., 2023; Singh, 2019; Goldsmith et al., 2021).

Despite engineered gene drive (EGD) organisms having never been released in the environment, discussions about community engagement are already underway. The challenge, however, is ensuring that such engagement is not merely a procedural formality but a structured, transparent, and inclusive process (Normandin et al., 2022). Ethical concerns go beyond biosafety and risk assessments; they touch on sovereignty, environmental justice, and the autonomy of communities that will be most affected. Yet, research shows that community engagement efforts often lack consistency and fail to address key governance questions in a meaningful way.

How do we move beyond debate and build a framework where community voices genuinely shape gene drive research and potential deployment?

2. The engagement debate: Are communities prepared?

Engaging communities in gene drive research is not simply about disseminating information; it is about ensuring that those affected have a real say in shaping the technology’s trajectory. Yet, studies show that while stakeholders often express interest, they lack access to reliable, localised, and unbiased information (Hartley et al., 2024; Finda et al., 2023). In regions where gene drive research is being actively explored, there is a stark contrast between scientific progress and public awareness. Misconceptions are widespread: some African stakeholders mistakenly believe that gene drive mosquitoes have already been released into the wild, underscoring the urgent need for clarity and accessibility in communication (Finda et al., 2023).

At the heart of this issue lies a power imbalance: who controls the flow of information, and who gets to make decisions? Without proactive, structured engagement, communities risk being passive recipients of a technology that could alter their ecosystems, livelihoods, and cultural landscapes (George et al., 2019). If engagement remains a secondary consideration, concerns about whose voices carry weight in decision-making will persist.

2.1. The challenge of informed consent: A model that falls short

Traditional models of informed consent struggle to accommodate technologies that affect entire ecosystems rather than just individuals (Singh, 2019). The ethical principle of Free, Prior, and Informed Consent (FPIC) is widely recognised as essential, yet its application in gene drive research remains inconsistent and often insufficient. Communities may be consulted, but consultation is not the same as empowerment. As George et al. (2019) caution, "wWithout a clear articulation of how FPIC applies to gene drive, communities may be consulted but ultimately left without increased influence in decision-making.

This challenge raises critical questions: Can consent be truly 'free' if communities lack access to unbiased information? Can it be 'prior' if engagement occurs only after key research decisions have been made? And can it be 'informed' if scientific literacy gaps persist?

2.2. Top-down engagement: A flawed approach

Another significant issue is the top-down nature of community engagement strategies. In many cases, national policymakers and regulators are consulted first, while local communities, the very people who will live with the consequences of gene drive interventions, are engaged later in the process (Thizy et al., 2019). This approach not only undermines the spirit of inclusivity but also risks alienating the very groups whose cooperation and trust are essential for long-term success.

The assumption that decision-making should be driven primarily by national institutions ignores the importance of local knowledge, lived experiences, and cultural values. True community engagement means shifting the model from a linear, hierarchical process to one that is iterative, community-led, and reciprocal. Instead of treating community engagement as an afterthought, it should be a continuous process that starts early and evolves alongside the research.

Without a commitment to rethinking engagement structures, EGD research may advance without the legitimacy, trust, and cooperation needed for ethical and sustainable implementation. The question remains: how do we move beyond a system where communities are informed after the fact and towards one where they help shape research from the ground up?

3. Breaking the communication barrier

Science communication is often the weakest link in community engagement efforts. Research shows that journalists, scientists, and the public frequently struggle to convey and interpret complex information effectively, leading to confusion and, at times, misinformation (Tonui et al., 2024; Schairer et al., 2020). Without proper training, even well-intended engagement efforts can have unintended consequences, reinforcing misunderstandings rather than clarifying them (Tonui et al., 2024).

One of the biggest obstacles? Language. Language. Scientific concepts do not always have direct equivalents in local languages, making discussions about gene drive research particularly difficult. According to Wanyama et al. (2021), technical terms can create an invisible barrier between researchers and communities, requiring translation that goes beyond mere words to capture meaning and intent.

To address this challenge, Wanyama et al. (2021) conducted a linguistic study with remote communities to identify gaps where key scientific terms lacked direct translations. Rather than imposing definitions, the researchers co-developed terminology with local speakers to ensure that gene drive concepts were conveyed in ways that aligned with community worldviews. This collaborative process, illustrated in Figure 1, highlights the importance of co-creation in scientific communication, ensuring that discussions are not only scientifically precise but also culturally relevant.

Beyond terminology, visual and multimedia tools have also proven valuable in bridging communication gaps. Schairer et al. (2020) demonstrated the effectiveness of narrated slideshows as an engagement tool. Using an interdisciplinary, co-design approach, researchers developed a series of narrated presentations to serve as a standardised introduction to EGD mosquitoes. These slideshows were used to anchor online, chat-based focus groups, prompting sophisticated questions, meaningful discussions, and engaged dialogue from participants. By investing in an iterative, collaborative process, the research team ensured that the materials were both scientifically accurate and accessible to lay audiences. The improvement of schematic genetic control of vectors, as shown in Figure 2, highlights how interactive, visual tools can enhance comprehension and facilitate more effective engagement.

Even when technical barriers are overcome, community engagement strategies often assume that presenting the facts is enough. But public perception of gene drive is shaped by more than just knowledge, it is influenced by trust, values, and risk assessment frames. As Liu et al. (2023) show, those who focus on the potential benefits tend to be more supportive, whereas individuals who are more attuned to possible risks are generally more skeptical.

Hobman et al. (2025) add a valuable layer to this understanding. In a national survey of 1,149 Australians, the public was divided into four distinct groups based on their attitudes toward genetic pest control: Certain Objectors, Fence Sitters, Cautious Supporters, and Certain Supporters. While most participants were content with ‘light touch’ engagement—receiving information online or through research summaries—a smaller but vocal segment, particularly the Certain Objectors, expressed a strong desire for deeper involvement. Nearly three-quarters of this group felt it was important to have a say, showing interest across all forms of engagement, from public meetings to written submissions.

What’s striking is how motivations varied across groups. Supporters were curious about the science itself—how it works, what it does—while objectors were more concerned with ethics, oversight, and who holds power in decision-making. This reinforces the idea that engagement isn’t just about communication formats but about building trust through relevance. If developers of gene drive technologies want to foster meaningful dialogue, they must recognise that engagement is not one conversation but many—and that a thoughtful, responsive approach will go much further than a uniform message.

4. From passive acceptance to active participation

To build trust, community engagement must go beyond mere consultation and move toward genuine collaboration and co-development where communities are not merely recipients of scientific knowledge but active partners in shaping research decisions. The Relationship-Based Model (RBM) exemplifies this shift, shifting decision-making from researchers to end-users.

A case study in São Tomé and Príncipe demonstrated the potential of RBM in practice. Instead of researchers dictating the engagement process, local leaders were given the authority to guide discussions, ensuring that community concerns and values directly influenced research priorities (Kormos et al., 2024). As the authors stated, "Successful engagement is not about persuading communities to accept gene drive, it is about designing research in ways that actively include them as partners from the start”.

Another example comes from agricultural pest management. Studies have shown that while many stakeholders support gene drive in principle, they raise valid concerns about unintended ecological consequences (Kokotovich et al., 2022). This highlights a critical point: engagement should not be an isolated or symbolic activity but must be embedded into governance and risk assessment frameworks so that local knowledge directly informs decision-making.

While EGD has not yet been tested in the field, discussions surrounding its potential applications highlight the importance of fairness and transparency in research. Ethical commitments should extend beyond early engagement to include long-term partnerships, continuous dialogue, and greater impact on decision-making. These principles, as highlighted by Long et al. (2020) and presented in Figure 3, are not just best practices but necessary foundations for responsible innovation.

5. Case Studies: What can we learn from African engagement models?

Real-world examples offer critical insights into how gene drive research is perceived, discussed, and engaged with at the community level. Across multiple African countries, researchers have explored the complexities of stakeholder engagement, revealing both opportunities and challenges in ensuring that discussions about gene drive technologies are inclusive, transparent, and contextually relevant. Through field studies, surveys, and participatory research, these cases illustrate how cultural, linguistic, and governance factors shape engagement strategies.

5.1. Stakeholder perceptions: Support and scepticism

Understanding how different stakeholder groups perceive gene drive technologies is crucial for designing effective engagement strategies. A multi-country study across 25 sub-Saharan African nations (Figure 4) aimed to explore these perspectives by surveying 180 stakeholders from various sectors, including academia, government agencies, advocacy groups, and regulatory institutions (Finda et al., 2023). The goal was to assess levels of awareness, support, and concerns regarding EGD mosquitoes as a tool for malaria control.

The findings revealed a mixed picture. While 76.7% of respondents were aware of EGD mosquitoes, only 28.3% had a clear understanding of their key attributes and potential applications. Despite this knowledge gap, 92.9% expressed support for field trials or implementation, provided they were given more information

These results highlight both the promise and the challenge of gene drive engagement. On the one hand, stakeholders showed willingness to consider new technologies, but on the other, limited understanding of gene drive mechanisms could influence decision-making.

5.2. Burkina Faso: Community engagement and the first release of non-gene drive genetically modified mosquitoes

In Burkina Faso, the Target Malaria project sought to understand how communities perceive and engage with genetically modified mosquitoes through a phased research approach. While this initiative did not involve EGD mosquitoes, it marked an important milestone as the first small-scale release of genetically modified mosquitoes in Africa (Toe et al., 2021).

Researchers aimed to test engagement strategies and community decision-making processes before moving toward more advanced genetic technologies. Before the 2019 release of non-EGD sterile male mosquitoes, extensive community consultation took place. Engagement was iterative and intensive, with weekly meetings to prepare communities, address concerns, and ensure transparency.

To make complex scientific concepts more accessible, engagement strategies included theatrical performances, visual aids, and guided visits to entomology research facilities. These interactive approaches helped demystify the research process and encouraged participation from diverse community groups, including women and youth, who are often excluded from decision-making (Toe et al., 2021).

To further empower communities, a local monitoring committee was formed. This group, composed of community representatives, was tasked with overseeing the project, tracking developments, and ensuring transparency (Toe et al., 2022). By allowing local actors to define monitoring elements and hold researchers accountable, the initiative fostered trust and co-ownership of the process.

However, challenges emerged, particularly in balancing scientific objectives with local governance expectations. While many community members supported the research, some stakeholders remained sceptical of its long-term implications.

5.3. Uganda: Information gaps and the challenge of public participation

Uganda has been identified as a potential site for the world's first EGD field trials, yet research highlights a major gap in public discourse and awareness (Hartley et al., 2024).

To explore this issue, researchers examined public perceptions of gene drive in Uganda and found that while interest in the technology was high, access to independent, reliable information was limited. This phenomenon, referred to as "information poverty," creates a power imbalance in decision-making. Without adequate resources, many Ugandans struggle to engage meaningfully in governance discussions, leaving decision-making largely in the hands of policymakers, scientists, and a small group of experts (Hartley et al., 2024).

Critiques from civil society organizations have raised concerns about who controls the flow of information and whether public consultations are truly independent and inclusive. Some fear that engagement efforts favour specific entities, limiting the ability of communities to shape governance decisions equitably.

Without equitable access to knowledge, the authors stated, the principle of "Africans deciding for themselves" may remain an unfulfilled promise rather than a genuine reality.

5.4. Tanzania: The role of scientists and local trust

In Tanzania, a study examined how different stakeholder groups, scientists, policymakers, and community members, perceived gene drive research. The results revealed an unexpected divergence in attitudes (Finda et al., 2020).

While policymakers and community members largely supported gene drive approaches, local scientists were more sceptical. Many scientists expressed concerns about safety, unforeseen ecological consequences, and the lack of African leadership in gene drive research. This scepticism underscores the need for greater investment in local scientific expertise to ensure that African voices shape the direction of EGD technologies (Finda et al., 2020).

Despite these concerns, the study found strong public trust in scientists. Policymakers and community members relied heavily on scientific advice to guide decision-making. However, this reliance also presents challenges: if scientific consensus is divided, it could impact policymaking and regulatory approvals.

5.5. The importance of language and cultural adaptation

Across all three case studies, language emerged as a critical factor in shaping engagement strategies.

In Burkina Faso, researchers found that scientific terms do not always have direct equivalents in local languages. To address this, a co-developed scientific glossary was created in collaboration with local linguists and community members (Wanyama et al., 2021). Focus groups helped refine translations, ensuring that terminology aligned with cultural understandings. For instance, the French word “chromosome” was adjusted in the Dioula language (figure 5) to better fit local linguistic frameworks.

This reflects a broader challenge in science communication; terms must not only be translated but also contextualised within local cultural perspectives.

6. Conclusion: How community voices shape the future of gene drive research

The future of gene drive research depends not only on scientific advancements but also on the quality and depth of community engagement. Annas et al. (2021) highlight this by proposing a code of ethics for gene drive research, built on three essential pillars: scientific responsibility, ecological stewardship, and public engagement & benefit-sharing. Meaningful engagement should go beyond consultation, integrating ecological risk assessments and structured decision-making well before any field trials take place.

Yet, ethical frameworks alone are not enough. As insights from African stakeholders emphasise, engagement efforts must be localised, inclusive, and continuous (Figure 6). As studies revealed, the disconnect between scientific scepticism and community optimism highlights the need for genuine collaboration, where scientists, policymakers, and communities co-develop research priorities and governance structures to ensure that gene drive research aligns with local needs, concerns, and ethical standards.

The choice is clear: If engagement is done right, gene drive could become a powerful tool for public health and conservation, addressing some of the most pressing global challenges. But if community engagement falls short, public resistance, regulatory barriers, and mistrust could halt even the most promising applications.

The question remains: Are we truly listening to the communities that will be most affected? Their voices are not just important, they are indispensable in shaping the future of gene drive research.

This infographic is a visual summary of the most important concepts in the article:

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