The tea had gone cold in my hands. Just moments earlier, the atmosphere in the mosque’s reception room had been warm with hospitality – sweet dates on a brass tray, the scent of cardamom rising from steaming cups. The two men who had led Friday prayers listened politely as I explained our genomic research on mental health. Then, with the quiet precision of a door clicking shut, the conversation ended. ‘Allah is the greatest of healers,’ they said, rising to signal my departure. The porcelain cup left a faint ring on the wooden table, marking the space where dialogue had been.
This moment stayed with me long after, not as a professional setback but as a cultural revelation. What we often document as ‘non-participation’ in research studies – those empty checkboxes on recruitment spreadsheets – holds entire narratives of faith, historical memory, and strategic self-protection. The Arab Muslim community’s polite refusal wasn’t absence of understanding, but presence of a different kind of knowledge. Their silence spoke in a language our consent forms couldn’t translate.
Across three years of engaging underrepresented communities in mental health genomics research, patterns emerged that challenged conventional wisdom about cultural barriers in medical research. The Sikh grandmothers kneading dough in temple kitchens knew exactly what depression was – they called it ‘the weight no one sees.’ The Black community organizers who cited the Tuskegee syphilis study weren’t suspicious of science; they were experts in its misuse. What appeared as reluctance often turned out to be rigorous discernment.
These experiences revealed a hard truth: when communities decline participation, the problem rarely lies with their comprehension of research. The rupture happens earlier, in the space between institutional protocols and lived reality. A 100-page ethics approval packet holds little weight against 400 years of medical exploitation. A £50 participation voucher can’t compensate for the collective memory of Henrietta Lacks’ stolen cells. We’ve been measuring engagement all wrong – counting signatures on forms when we should be listening to the meanings behind polite declines.
As researchers, we’re trained to document refusals as data points. But what if we recorded them instead as cultural texts to be read closely? The mosque’s quiet closure of discussion, the gurdwara elder’s proverb (‘Our Guru will protect us’), the Black focus group participant’s rhetorical question (‘Haven’t you taken enough?’) – these aren’t obstacles to overcome. They’re compasses pointing toward the broken trust we must repair.
This isn’t about making research more palatable to minority communities. It’s about recognizing that their critiques of medical systems are often more informed than our assumptions. The grandmother who worries her DNA might ‘travel farther than her grandchildren ever could’ isn’t paranoid – she’s remembering colonial botanists who cataloged indigenous plants while erasing indigenous people. Her hesitation isn’t a barrier to inclusion; it’s a lesson in ethical rigor we’ve yet to learn.
Over the next sections, we’ll examine how three communities – Arab Muslims, Sikhs, and Black British populations – navigate the fraught terrain of medical research participation. Each demonstrates distinct yet overlapping strategies of resistance, from theological boundaries to gendered silences to historical memory. Together, they reveal why traditional models of ‘community engagement’ often fail, and how we might begin building research practices worthy of participation.
The Arab Muslim Community: When Faith Becomes the Operating System
That moment in the mosque stays with me – the way the steam from the lentil soup curled between us as the conversation cooled. One minute we were discussing community health initiatives, the next I was being gently but firmly shown the door. It wasn’t anger that ended the discussion. It was something far more impenetrable: the quiet certainty that their worldview required no medical intervention for what I called depression and anxiety.
Faith as Framework, Not Obstacle
What researchers often misinterpret as resistance is actually a coherent belief system where mental distress serves a spiritual purpose. In this framework, depressive episodes become tests of faith (‘ibtila’) rather than neurotransmitter imbalances. Anxiety transforms into a reminder to strengthen one’s trust in divine will (‘tawakkul’). When a community elder told me “Allah is the greatest of all healers,” he wasn’t rejecting science – he was operating within a different paradigm where healing and suffering both hold sacred meaning.
This became painfully clear when reviewing the Genomics England report showing 68% of Muslims viewed genomic research positively, yet only 4% participated. The gap reveals what standardized consent forms fail to capture: abstract approval doesn’t translate to bodily engagement when belief systems assign different values to human intervention.
The Colonial Imprint on Contemporary Caution
Beneath this faith-based perspective runs a historical undercurrent many researchers miss. Colonial psychiatry left deep scars across the Muslim world – from British asylums in 19th century India diagnosing resistance leaders as mentally ill, to French psychiatrists in Algeria pathologizing anti-colonial sentiment. When today’s mosque leaders hesitate to participate, they’re not just protecting theological boundaries but responding to generations of medical systems being weaponized against their communities.
This caution intensifies for those with precarious immigration status. One Syrian refugee put it bluntly: “You want my DNA while my cousin sits in a detention center?” For communities where state surveillance is a lived reality, biological data collection feels less like scientific progress and more like another layer of exposure.
The AYB Factor: When Silence Protects More Than Words
Cultural concepts like ‘ayb’ (shame/dishonor) create additional complexity. Mental health discussions risk exposing family struggles to community judgment – a concern particularly acute for women balancing traditional roles with modern pressures. Several mothers confessed they’d discussed depressive symptoms only with their imams during private counseling sessions, never in clinical settings where records could surface.
What appears as non-participation is often careful risk calculation. As one Jordanian grandmother explained while serving ma’amoul cookies: “We handle these matters like we handle this dough – gently, privately, before God.” Her hands shaped the date-filled pastries as she spoke, demonstrating the quiet containment her community practices.
Rethinking Engagement Beyond Forms and FAQs
These encounters taught me that standard outreach methods – translated brochures, mall kiosks, even community center presentations – often backfire by emphasizing exactly what makes participants wary: institutional authority, written documentation, and the clinical framing of experiences they view as spiritual.
More effective approaches emerged organically:
- Working with mosque women’s groups to co-design discussion guides that aligned mental health concepts with Islamic teachings on patience (sabr) and hardship (fitna)
- Partnering with trusted halal butchers to host informal coffee hours where biological samples weren’t even mentioned for the first three meetings
- Creating visual consent materials showing exactly how DNA would be anonymized, with infographics styled like Islamic geometric art to build cultural familiarity
These adaptations didn’t erase all hesitations, but they shifted conversations from transactional data collection to mutual understanding. As one participant noted, “When you stopped bringing forms and started bringing your real questions, we brought our real answers.”
Perhaps the most humbling lesson was recognizing that some boundaries exist for good reason. The same faith protections that frustrate researchers also sustain communities through hardships no study could alleviate. Our challenge isn’t to break through these boundaries, but to respectfully engage with the wisdom behind them.
The Unspoken Rules of Healing: When Kitchens Become Sanctuaries
The gurdwara kitchen smelled of cumin and ghee, of rolled dough hitting hot tawa, of generations of women working in rhythmic silence. I watched as elderly Sikh women – their hands kneading flour with the same care they might have once used to soothe children – exchanged glances that carried entire conversations. No consent forms here. No research protocols. Just the quiet understanding that this space, this act of preparing langar together, was where healing happened.
The Language of Rotis and Resilience
What medical journals call ‘group therapy,’ these women called ‘making chapatis.’ Their depression had no clinical labels here; it lived in the pauses between stories of abusive husbands, in the way their shoulders relaxed when another woman passed the rolling pin without being asked. The kitchen wasn’t a metaphor – it was the only place where patriarchal structures loosened just enough for truth to slip through.
‘We tried sending social workers,’ the gurdwara volunteer told me later. ‘But our aunties won’t speak to strangers in suits. They’ll cry into the dal instead.’ The contradiction was stark: a community kitchen designed to feed thousands openly, yet mental health discussions confined to whispered exchanges between rotating hands.
The Weight of Warrior Genes
The men’s domain operated on different rules. ‘Mard nu ki demagi bimari?’ (What kind of man gets mental illness?) became both shield and prison. Sikh masculinity, forged through centuries of defending against Mughal invasions and British colonial rule, left little room for vulnerability. I heard it in their jokes – how depression was just ‘goron ka fashion’ (white people’s trend) – and in the way elders dismissed anxiety as ‘fizool di bakwas’ (useless nonsense).
Yet history explains what first appears as ignorance. During Partition, when Sikh women faced systematic sexual violence, the community response was to equate protection with control. Today, that legacy manifests as men gatekeeping health narratives, convinced that speaking about struggles would betray their ancestors’ sacrifices. The same martial pride that sustained the community now strangles its emotional vocabulary.
When Silence Speaks in Dough and Dal
Research participation requires trust these women couldn’t afford. One auntie explained through the volunteer: ‘If I put my name on your paper, my son-in-law’s family will say I’ve shamed them.’ Their refusal wasn’t disengagement – it was sophisticated risk assessment. Every potential benefit (better mental health services) carried catastrophic costs (losing custody of grandchildren).
The tragedy? This kitchen-table wisdom holds solutions Western research overlooks. The women’s rotating work system – each taking turns to listen while others cooked – mirrored peer-support models now hailed as ‘innovative’ in academic papers. Their embodied knowledge, passed through generations of rolled dough and shared tears, could teach us volumes about sustainable mental health care. If only we’d stop insisting they come to our clinics to be ‘studied.’
The Black Community: DNA Extraction and the Resistance of Memory
It started with a question that cut deeper than any consent form could anticipate: “Why should I give you my DNA when the system is based on the exploitation of my ancestors and slavery? Haven’t you taken enough?” The room, filled with clinicians and community researchers working to increase Black participation in health studies, fell silent. This wasn’t reluctance—it was a reckoning.
Tuskegee’s Ghost in the Consultation Room
The specter of the Tuskegee Syphilis Study (1932-1972) lingers in every research invitation extended to Black communities. For forty years, 399 Black men with syphilis were observed without treatment, even after penicillin became available. The study wasn’t terminated due to ethical concerns—it ended because a whistleblower exposed it to the press. This isn’t ancient history; the last survivor died in 2004. When current ethics boards promise “no harm,” communities remember that government physicians once documented spinal taps performed without anesthesia as the men cried out.
Henrietta Lacks’ immortal cells (HeLa) compound this distrust. Taken without consent in 1951, her cervical cancer cells spawned a billion-dollar biotech industry while her family struggled to afford healthcare. These narratives aren’t abstract—they’re family stories passed down like heirlooms of caution.
The Cruel Math of Medical Racism
Modern genomic research reveals an uncomfortable truth: 78-88% of participants in genome-wide association studies are of European descent. When psychiatric medications are developed using this skewed data, the consequences are tangible:
- Antidepressants like escitalopram show reduced efficacy in Black patients
- Antipsychotics like olanzapine require higher doses for clinical effect, increasing side effect risks
- Genetic risk scores for conditions like schizophrenia perform 60% worse in African ancestry populations
One community health worker explained the vicious cycle: “When my uncle told his doctor the voices were ancestors speaking, they upped his meds until he couldn’t stand. Now we’re the ‘non-compliant’ ones?” What researchers label as treatment resistance often represents rational rejection of interventions that fail—or harm—their bodies.
The Currency of Refusal
£50 gift cards for participation land differently when:
- Your great-grandfather was paid $0 for his forced labor
- Your grandmother’s cells generated patents worth millions
- Your child’s DNA could become corporate IP
A retired Windrush-generation nurse framed it sharply: “They took £40 trillion from our homelands, now want our genes for a voucher?” The transactional approach feels less like compensation, more like continued extraction.
Yet this resistance isn’t anti-science—it’s hyper-awareness. Black communities increasingly support patient-led genomic initiatives like the African Caribbean Leukaemia Trust’s bone marrow registry, where donors control data usage. The difference? These models center sovereignty over sampling, reciprocity over extraction.
Rewriting the Script
Three shifts could begin repairing trust:
- Transparent Lineage Tracing
- Show exactly how samples move from tube to lab to pharma
- Implement blockchain-based consent tracking
- Community IP Frameworks
- Adapt the Navajo Nation’s model requiring tribal approval for genetic studies
- Explore benefit-sharing like the San people’s Hoodia profit agreement
- Ancestral Accountability
- Open studies with acknowledgments of historical harms
- Include ethicists descended from exploited communities in review boards
As one participant noted: “We don’t fear knowledge—we fear being known on your terms.” Until research acknowledges that distinction, even the most meticulously designed studies will grapple with the weight of unspoken histories.
The Coloniality of Participation Models
A hundred-page ethics approval form sits heavy in my hands, its clinical language about ‘voluntary participation’ and ‘data anonymization’ printed neatly under an NHS letterhead. Across the table, an elder from the local Sikh gurdwara sips chai slowly, his eyes lingering on the document before pushing it back toward me with a quiet sigh. ‘You people,’ he says, not unkindly, ‘think trust can be signed away like a grocery receipt.’
This moment crystallizes the central illusion plaguing minority health research: that procedural rigor equals ethical integrity. We design elaborate consent processes, offer financial incentives, and wonder why communities still hesitate. But as the chai grows cold between us, I’m forced to confront what decades of academic training never taught me – that no amount of institutional approval can compensate for historical betrayal.
When Paper Promises Collide With Lived Memory
The fundamental flaw lies in assuming trust is transactional. To researchers, a £50 participation voucher represents fair compensation. To descendants of the Tuskegee syphilis experiment, it echoes the ‘free health checks’ that lured their grandfathers into lethal deception. Our consent forms speak of future benefits; their cultural memory whispers of past extraction. This isn’t mere skepticism – it’s rational calculus shaped by generations of evidence.
Genomics England’s own data reveals the dissonance: while 68% of British Muslims express theoretical support for genetic research, only 4% actually participate. The gap between sentiment and action isn’t about comprehension levels – it’s about recognizing that systems demanding biological samples today are the same systems that historically weaponized medical data against marginalized groups.
The Insult of Incentives
Nothing exposes this power imbalance more starkly than our reliance on financial incentives. A Black participant in our focus group put it bluntly: ‘After slavery stole our ancestors’ bodies and pharmaceutical companies patented their cells, now you offer £75 for our DNA?’ The monetary amount becomes irrelevant – the very premise of commodifying biological data replicates colonial patterns of extraction.
In Arab Muslim communities, the issue takes theological dimensions. ‘Rizq (sustenance) comes from Allah, not your research grant,’ a mosque leader reminded me when I mentioned compensation. Our economic framing clashed with spiritual values around giving – another reminder that standard engagement playbooks assume Western capitalist norms.
The Vicious Cycle of Data Absence
Perhaps the cruelest paradox emerges in medication development. Psychiatric drugs designed using predominantly white genomic data often prove ineffective or harmful for minority populations. When these treatments fail, communities interpret it as neglect, further eroding trust and participation. The cycle perpetuates: no representative data → biased treatments → negative health outcomes → deeper distrust → continued data absence.
A Sikh grandmother described watching her daughter deteriorate on antidepressants: ‘The doctor kept increasing the dose, but her pain only grew. Now we know – those medicines weren’t made for bodies like hers.’ Her words hung in the air, a damning indictment of how ‘evidence-based medicine’ becomes unreliable when the evidence excludes entire populations.
Toward Relational Accountability
Breaking this cycle requires dismantling three myths:
- Myth of Neutrality: Pretending research exists outside historical context (‘We’re not those bad old scientists!’). Truth: All medical institutions carry colonial legacies that must be actively reckoned with.
- Myth of Transaction: Believing trust can be purchased through incentives. Truth: Only consistent, transparent relationship-building over years creates real participation.
- Myth of Closure: Treating consent as one-time signature. Truth: Communities deserve lifelong updates on how their contributions are used.
The path forward isn’t about better forms, but fundamental power shifts – from extractive research to community-owned science. As that Sikh elder finally told me, returning the unsigned consent form: ‘Come back when you’re ready to sit at our table as guests, not collectors.’
From Extraction to Coexistence: Three Shifts Toward Ethical Engagement
The tea had gone cold in my hands long before the mosque elder spoke the words that would haunt my research practice: “Allah is the greatest healer.” That moment crystallized a truth we too often ignore—when communities decline participation in studies, it’s not a failure of our outreach methods, but a mirror held up to our entire approach. What if the solution isn’t persuading more people to say yes, but fundamentally reimagining how we ask?
Rewriting the Invitation: Language as Cultural Bridge
Early in my work with Sikh communities, I learned about langar, the communal kitchen where all sit as equals to share meals. Yet when I framed DNA sampling as “helping science,” the same people serving meals turned away. The breakthrough came unexpectedly through an elderly woman rolling rotis who remarked, “We don’t give blood for your papers—we give it for seva (selfless service).”
This revealed our first critical shift: research invitations must speak the community’s spiritual language, not just its vernacular. In Muslim contexts, replacing “research participation” with rizq (divine sustenance) acknowledges contributions as sacred acts. For Black churches, positioning biosamples as “ancestral legacies” rather than data points connects to traditions of intergenerational care. The words matter less than the cultural scripts they activate—a genomic study becomes not an extraction, but an act of communal preservation.
Transparency Beyond Consent Forms
A Black participant once showed me her copy of the Tuskegee study’s original consent form. “See how pretty the lies were printed?” she said. This underscores our second shift: trust isn’t built through paperwork, but through radical transparency about power.
Practical steps emerged from communities themselves:
- Sample tracking: Providing GPS-like updates on biosample journeys (“Your swab reached Lab X on May 3 for depression marker analysis”)
- Outcome mapping: Showing concrete impacts (“63% of Sikh participants’ data informed new anxiety medication trials”)
- Failure reporting: Sharing when studies don’t deliver promised benefits, avoiding the “vanishing act” that fuels distrust
One Imam put it bluntly: “If you want my DNA, show me the machine that will read it, and the faces of those controlling it.”
Letting Communities Set the Terms
The most humbling lesson came from a Sikh women’s group that rejected my mental health survey but proposed an alternative: “Study why your clinics turn away women smelling of spices.” This illustrates our third shift: true participation begins when communities define what warrants investigation.
Successful models share three traits:
- Co-designed protocols: Like a Manchester study where Caribbean elders helped shape dementia research questions
- Community IRBs: Local review boards with veto power over sensitive topics (pioneered by Native American genomics projects)
- Benefit covenants: Legally binding agreements ensuring discoveries reach participants first (modeled after Hawaiian biobanks)
As a Yoruba nurse in Leeds told me: “We’re not your database. We’re your partners—or we’re nothing.”
The Hardest Lesson: Honoring ‘No’
Perhaps the most profound shift is accepting refusal as legitimate. When a Romani community leader explained their non-participation—”Our blood remembers what your records forgot”—it wasn’t an obstacle to overcome, but a boundary to respect. Sometimes, the most ethical response is to walk away, carrying not data but deepened understanding of what true consent requires.
This isn’t about perfect solutions. It’s about recognizing that every polite refusal, every stalled recruitment drive, holds an unspoken question: Are you here to take, or to truly exchange? The answer determines whether our work heals—or replicates the very wounds we seek to mend.
The empty teacup still sat on the low table when the mosque administrator escorted me to the door. His smile hadn’t wavered since our first handshake three hours earlier, but the shift was unmistakable – the moment I mentioned collecting DNA samples to study depression in their community, the air thickened with something far more complex than reluctance. That ceramic cup, its intricate arabesque patterns glazed in cobalt blue, became the perfect metaphor for what I’d failed to understand: their refusal wasn’t an empty vessel to be filled with my explanations, but a carefully crafted container holding generations of unspoken knowledge.
What stays with me years later isn’t the rejection itself, but the profound dignity of that moment. We’d moved through all the expected motions – the fragrant cardamom tea, the exchange of academic credentials, the respectful nods when I explained our ethics board approvals. Yet when the conversation touched mental health genetics, their withdrawal manifested not as hostility, but as a quiet closing of doors I hadn’t even realized were there. “Allah is the greatest of healers,” the elder had said while rising from his cushion, dusting invisible crumbs from his thobe. The words weren’t dismissal so much as redirection – an invitation to consider that our frameworks might be the limited ones.
This scene replays in my mind whenever colleagues describe minority communities as “hard-to-reach.” The language itself reveals our bias – as if the problem lies in others being distant or concealed, rather than in our inability to recognize the valid boundaries they’ve drawn. Those mosque leaders weren’t hiding from knowledge; they were protecting a sacred epistemology where spiritual trials and medical diagnoses occupy separate realms of meaning. Their silence wasn’t ignorance speaking, but wisdom choosing its battles.
Three fundamental truths emerged from that day and subsequent work across Muslim, Sikh and Black communities:
- Trust cannot be documented into existence – No stack of ethics approvals can outweigh lived experience of systemic betrayal
- Refusal is often the most informed response – When history shows participation leads to harm, disengagement becomes self-preservation
- Our participation models still carry colonial DNA – From £50 incentives to rapid data extraction, we’ve institutionalized transactional relationships
The challenge before researchers and designers isn’t convincing communities to say yes, but radically reimagining what ethical engagement looks like when “no” is the starting point. This requires uncomfortable shifts:
- From seeing cultural barriers as problems to solve → To recognizing them as boundary-setting we must respect
- From diversity as data quotas → To power-sharing in study design and ownership
- From one-off consent forms → To lifelong accountability for how samples are used
That mosque visit taught me to listen differently. Beneath their polite deflection pulsed generations of wisdom about what happens when vulnerable communities entrust their bodies to systems that view them as specimens rather than sovereign people. The real question isn’t why they refused, but why we expected otherwise – and what it says about our field that we still frame such refusals as failures rather than legitimate critiques.
Perhaps true progress begins when we stop asking “How do we increase participation?” and start asking “What would make our work worthy of participation?” The answers might require more transformation than we’re ready for – but that ceramic teacup reminds me daily that some vessels can’t hold new wine until we acknowledge the old vintage still lining their walls.