
The challenge
To bring communities who've been traditionally excluded and are under-heard into a conversations about genomics in healthcare. Meaningful participation starts with building health literacy. This takes time. Building the conditions for trust by acting as a bridge between Genomics England and global majority communities.
What we did
People Street designed the programme around four principles: reciprocity, intersectionality, transparency, and accessibility. Participation was not data extraction. Participants received health literacy support, ongoing feedback, and genuine influence over outcomes. They were briefed before sessions, interim findings were shared between cycles, and communities were shown how their input would shape decisions. A two-phase structure built trust and understanding before deliberating on practical questions. Recruitment leveraged trusted local networks: community leaders, mosques, outreach workers, mother-and-toddler groups, peer referrals. No commercial panels were used. 48% of interviews were conducted in languages other than English. More than half of participants had a disability or long-term health condition. The People Street team delivered Community-Led Research, engagement workshops and community roundtables in East London and Birmingham between October 2025 and February 2026. We used health inequalities data to guide our decision making. We focused on intersectional communities at the greatest risk of exclusion.
The outcome
Findings are structured by five themes: • Hopes and concerns about genomics • Trust and data security in genomics • Histories and harms • Information and access needs • Consent, life course and responsibilities Key findings: trust was conditional on confidence in the institutions holding data, not on the technology itself. Participants consistently raised concerns about structural racism, data misuse, commercial exploitation, and the risk that AI and genomic tools could reinforce existing healthcare inequalities. Human oversight was seen as non-negotiable. Consent was understood as an ongoing relationship, not a one-time event. Language and cultural meaning shaped everything 'DNA', 'genetic risk' and 'genomics' carried different associations across communities, from paternity stigma to concerns about family reputation. People Street treated these not as communication problems but as valuable data about how trust is constructed. This demonstrated that community-led, culturally competent, anti-extractive deliberation on complex health technologies is directly transferable to a national programme seeking to hear the communities traditionally left behind. The final report will be launched in autumn 2026
In partnership with Genomics England in partnership with HVM, Rand, The Social Agency, The Leap · January 2026