More Than Participants: Black Communities and the Future of Genomics - Challenging assumptions about science, culture, and engagement
By Dr Jerome Atutornu, Homerton Alum and Senior Lecturer at the School of Health, Science and Society, University of Suffolk
Black communities have been underrepresented in medical research, not just in participant numbers, but in voice, leadership, and invitation to shape the questions being asked within research. Nowhere is this clearer than in the fast-evolving field of genomics. Behind the promise of personalised medicine lies a troubling reality: science is built on datasets that exclude the very populations most impacted by health inequities.
For decades, efforts to diversify science have focused heavily on recruitment. That is getting more people from underrepresented backgrounds into research studies, clinical trials, or even scientific careers. But this approach often treats inclusion as a numbers game rather than an opportunity to transform science itself. Perhaps a better approach might be not just to invite Black communities to take part in genomic research, but to reimagine how science itself is conducted?
Black communities, particularly those of African ancestry in the UK and across the diaspora, are too often positioned as "hard to reach” and yet this really only demonstrates a limit to existing community engagement processes. Many Black communities are already engaging with science but just not always in ways recognised by traditional institutions and dominant narratives. The problem is not that Black communities are disinterested in science. It is that science has too often been introduced without context, reciprocity, and respect for existing knowledge systems.
Drawing on insights from my recent doctoral research (hosted at Homerton College), with Ghanaian publics in both Ghana and the UK, we see that people are thinking critically about science, data, and health. Our work is shaped by two key concepts: science capital and funds of knowledge and we use this to explore the lived experience and expectations of science, not from the perspective of scientists, but from the perspective of communities. Science capital refers to the knowledge, familiarity, networks, confidence, and exposure that shape how people engage with science. Funds of knowledge point to the skills, stories, and wisdom people carry from their cultures to navigate their everyday lives. Crucially what counts as legitimate knowledge, familiarity or network is arbitrary and often mediated by dominant group values (i.e. the scientists themselves) and not those of minoritised groups.
Often, among the Black community, health research focuses on recruitment, getting more Black people into studies, without building trust or addressing the reasons people hesitate. This study suggests a shift is needed: from “How do we get them in?” to “What are they telling us?” Black communities are not hard to reach. They are just easy to overlook when systems are not listening.
The study clearly demonstrated that people possess science capital, and this emanates from their socio-cultural circumstances (their funds of knowledge). In our focus groups involving 40 Ghanaian members of the public from both Ghana and the UK diaspora we found that participants used everyday metaphors (blood, family trees, spiritual inheritance) to make sense of genetic ideas, which admittedly seem esoteric at present. They did not need a PhD in genetic sciences to understand the stakes or articulate complicated terminologies. What they needed was recognition: of their knowledge, their “language”, and their legitimate concerns about privacy, legal frameworks and benefit sharing.
Participants in focus groups shared concerns about data misuse, commercial exploitation, and lack of legal safeguards, not out of ignorance but grounded in historical memory and lived experience. These communities were not “anti-science”; they quite simply had reasonable expectations that science should be ethical, transparent, and respectful of its research participants. These demands are borne partly out of familiarity with past and contemporary unethical and racist practices. From the exploitation of African bodies in colonial medicine to the underrepresentation of Black researchers in academic institutions today, the scars of exclusion run deep. In fact, they had moved beyond wanting to trust based on mere promises but rather demanding legally binding agreements, a post trust paradigm. The quotes below exemplify this.
“Naturally, someone can be in the lab and do that [create a virus to target specific people]. The only way we can all agree to what we are doing is that when something is being prepared in the kitchen, we Black people too need to be in the kitchen to see what is being prepared so that everyone can believe that nobody has put anything poisonous into the food.” [Participant 1]
“As far as trust is concerned, it does not matter who the person is. It would be difficult to just trust somebody. We would have to sign legal agreements for such DNA data to be released. I think that would be better. Then, there would have to be an agreement that it would be held confidentially. But saying you would trust someone without signing an agreement? No, you cannot trust someone like that.” [Participant 2]
To position Black communities as “more than participants” means recognising them as knowledge producers, ethical stewards, and co-designers of scientific futures. It means acknowledging that engagement is not just about explaining science better, but about listening to the values, beliefs, and concerns that shape people’s decisions to engage with science or not. Many Ghanaian participants, for example, framed genomic data through concepts of common ancestry, spirituality, and communal responsibility—perspectives that offer valuable, alternative lenses for understanding genomics and a platform to safeguard the safety of the community.
True inclusion in genomics demands more than informed consent forms and diversity targets. It requires systemic shifts in how research questions are asked, how data is collected and governed, and whose worldviews matter in shaping the interpretation of results. This might mean involving community leaders in research oversight, co-creating public engagement tools in local languages, or embedding cultural frameworks into study design.
Meaningful engagement means meeting people where they are linguistically, culturally, and ethically. It means involving community members in the design of research, not just as participants but as partners. It means respecting collective decision-making, and the importance of seeing someone who looks like you on the other side of the consent form. This poignant quote gives an insight into the scale of the job at hand.
“There is no doubt in me that I will donate my DNA to a Black person like me. Someone who speaks the same language as me. I would trust such a person more than a White person who (in my opinion) is acting like he wants to help me. So, if the person is a Black person and speaks my language, Ewe, then I would trust him or her because as Ewes, our language unites us a lot. For us Ewes, the moment you hear a person speak your language, you connect to the person naturally, unlike other tribes such as Akan or Ga. The moment you hear a person speaking Ewe, it feels like the person is your brother or sister”[Participant 3]
As the NHS and global research institutions move towards more personalised, data-driven medicine, the inclusion of diverse populations is not just a moral issue, it is a scientific one. If the data only reflects a narrow slice of humanity, the outcomes will too. Health disparities will widen, not shrink.
But there is a different path. One rooted in justice, partnership, and recognition.
The future of genomics, if it is to be equitable, must move beyond seeing Black communities as subjects of study and toward recognising them as collaborators, critics, and co-creators. After all, science does not exist in a vacuum. It is shaped by the societies it serves. And Black communities, with their rich histories, knowledges, and aspirations, have much to offer, not just to science, but to the kind of future we all want to build.
“That is me [my DNA] in a code. That’s me giving ‘me’ up to a system that has not been trustworthy in the past. It’s tricky.”[Participant 4]
We need new frameworks for health communication and engagement. Ones that do not assume patients are empty vessels waiting to be educated, but recognise the cultural knowledge they bring, their funds of knowledge. In genomics and beyond, the challenge is the same: to co-create systems where people can see themselves, and trust that their voice matters.
As a community we can continue to operationalise our communal ethos by establishing community governed research participation panels and data co-operatives that further signal our readiness to engage and co-create the research agenda (as opposed to being “hard to reach”) but at the same time signalling that we will not be taken advantage of.
It is time to move beyond the deficit model and embrace a justice-oriented, community-driven approach. True engagement starts with listening, sharing power, and building trust.
The message from Ghanaian participants was clear: we are ready to engage. But we want honesty and accountability. We want justice and to be heard.
Citation List:
Archer, L., Dawson, E., DeWitt, J., Seakins, A., & Wong, B. (2015). “Science capital”: A conceptual, methodological, and empirical argument for extending bourdieusian notions of capital beyond the arts. Journal of Research in Science Teaching, 52(7), 922–948. https://doi.org/10.1002/tea.21227
Atutornu, J., Milne, R., Costa, A., Patch, C., & Middleton, A. (2022). Towards equitable and trustworthy genomics research. EBioMedicine, 76. https://doi.org/10.1016/J.EBIOM.2022.103879
Atutornu, K. (2024). ATTITUDES OF GHANAIAN PEOPLE TOWARDS GENOMICS AND SHARING GENOMIC DATA [University of Cambridge]. https://www.repository.cam.ac.uk/items/5b01f0ea-1c05-4b57-aa96-ac65c87c7e01
Bansal, N., Karlsen, S., Sashidharan, S. P., Cohen, R., Chew-Graham, C. A., & Malpass, A. (2022). Understanding ethnic inequalities in mental healthcare in the UK: A meta-ethnography. PLOS Medicine, 19(12), e1004139. https://doi.org/10.1371/JOURNAL.PMED.1004139
Chen, C. Y., Kahanamoku, S. S., Tripati, A., Alegado, R. A., Morris, V. R., Andrade, K., & Hosbey, J. (2022). Systemic racial disparities in funding rates at the National Science Foundation. ELife, 11, e83071. https://doi.org/10.7554/ELIFE.83071
Constantinescu, A. E., Mitchell, R. E., Zheng, J., Bull, C. J., Timpson, N. J., Amulic, B., Vincent, E. E., & Hughes, D. A. (2022). A framework for research into continental ancestry groups of the UK Biobank. Human Genomics, 16(1), 1–14. https://doi.org/10.1186/S40246-022-00380-5/FIGURES/8
G Sirugo, S. W. S. T. (2019). The Missing Diversity in Human Genetic Studies. Cell, 177(1), 26–31. https://doi.org/10.1016/j.cell.2019.02.048
Gardner, A. K., & Harris, T. B. (2020). Beyond Numbers: Achieving Equity, Inclusion, and Excellence. Annals of Surgery, 271(3), 425–426. https://doi.org/10.1097/SLA.0000000000003490,
Graves, J. L., Kearney, M., Barabino, G., & Malcom, S. (2022). Inequality in science and the case for a new agenda. Proceedings of the National Academy of Sciences of the United States of America, 119(10), e2117831119. https://doi.org/10.1073/PNAS.2117831119/ASSET/B7CE26FE-B1B7-4C81-94D0-6780C5D6D359/ASSETS/IMAGES/LARGE/PNAS.2117831119FIG01.JPG
Jiménez-Trejo, F., Jiménez-García, K. L., Lisboa-Nascimento, T., Rodríguez-Vega, S., Cervantes-Escárcega, J. L., & Canul-Medina, G. (2025). Scientific racism as a public health emergency of global concern. Lancet Regional Health - Americas, 44, 101049. https://doi.org/10.1016/J.LANA.2025.101049
Martins, T., Abel, G., Ukoumunne, O. C., Mounce, L. T. A., Price, S., Lyratzopoulos, G., Chinegwundoh, F., & Hamilton, W. (2022). Ethnic inequalities in routes to diagnosis of cancer: a population-based UK cohort study. British Journal of Cancer, 127(5), 863–871. https://doi.org/10.1038/S41416-022-01847-X;SUBJMETA=2324,4028,631,67,692;KWRD=CANCER+EPIDEMIOLOGY
Moll, L. C., Cathy, A., Neff, D., & Gonzale, N. (1992). Funds of Knowledge for Teaching: Using a Qualitative Approach to Connect Homes and Classrooms. Theory Into Practice, 31(2), 132–141. https://doi.org/10.1080/00405849209543534/ASSET//CMS/ASSET/7A24816B-8754-444D-9DCA-DCCF92293C0B/00405849209543534.FP.PNG
NIHR. (2025). Hard to reach or easy to ignore: Engaging Diverse Communities. NIHR: Applied Research Collaboration North London. https://arc-nwl.nihr.ac.uk/news/hard-to-reach-or-easy-to-ignore-engaging-diverse-communities
Robertson, R., Williams, E., Buck, D., & Breckwoldt, J. (2021). Ethnic health inequalities and the NHS Driving progress in a changing system. www.kingsfund.org.uk
