One of our key programme objectives is to positively impact policy, practice and careers. As part of this goal, we aim to ensure that our professional-facing activities acknowledge structural inequality in the UK, and actively include and promote the participation of both current, and the next generation, of under-represented healthcare and research professionals. Workforce development is part of this endeavour, and we believe that supporting a diverse and inclusive cohort of research professionals is one way to ensure that the benefits of genomics-based knowledge can be experienced by everyone in our society.
We work collaboratively to make our activities with global communities inclusive; increase awareness and understanding of research inequality between the Global North and South; and address specific barriers to both participating in, and benefiting from, research. We support a number of short and longer-term initiatives to translate our aims into actions; here is snapshot of some of them.
This year , we participated as a host organisation as part of the Health Data Science Black Internship Programme. As an expanding field with the potential to transform the future of health and care for all, the UK has an urgent need for new health data scientists. This internship programme is for early career Black data scientists – a heavily under-represented group in the sector, and is run by Health Data Research UK and the UK Health Data Research Alliance in partnership with 10,000 Black Interns initiative. It aims to tackle the underrepresentation of Black people within the health data science sector, and to provide talented candidates with the experience they need to kick-start their science careers.
We were delighted to host medical student Elvis Anunwa during the summer in 2023. Elvis worked as part of our Learning and Training team, supporting the development of new approaches to accessing our bioinformatics training resources for researchers across the world.
“Working with expert genome sequencing instructors on these courses has been a truly enriching experience. It allowed me to dive deep into the administrative aspects while benefiting from a supportive environment and invaluable feedback, which I intend to carry forward throughout my professional journey.”
– Elvis Anunwa, medical student and HDRUK intern
Together with the Wellcome Sanger Institute we currently fund and support PhD research students in the social sciences at the University of Cambridge who are exploring the intersection of genomics, diversity, and inclusion, building on their lived experience as people of Black heritage in the UK.
Lydia Okoibhole was previously a research assistant and has interests in the sociocultural and economic determinants of effective health engagement. She joined us as a PhD student in October 2023.
“There are many things a PhD will give me the opportunity to do and achieve but I am most looking forward to contributing knowledge to a field that is incredibly important and one that I am very passionate about. Sickle cell disease is a condition that doesn’t get the spotlight I feel it deserves and social science research on this topic is limited so I am genuinely excited to become an expert in a field that impacts my community.”
– Lydia Okoibhole, first year PhD student
Sasha Henriques was a genetic counsellor in the NHS, and is currently investigating what constitutes ‘socially just’ genomics research practice around data categorisations when issues around race, ethnicity and ancestry are encountered. Human population categories are regularly used in genomics research, and how these terms are defined and implemented in the categorisation of genomic data impacts our understanding of genes and their function. The language used to describe population groups may have contributed to the unequal outcomes of genomics research for individuals from different ethnic or geographical backgrounds. Sasha’s project explores how and why researchers, and the public, use these population descriptors, and seeks to understand the systems that underpin ethical choices for genomic researchers using human data. Ultimately her work will inform policy and guidance recommendations for scientists working in this field.
“Thanks to the enhanced studentship stipend, I am excited that I can focus solely on this project, without the need to juggle other professional responsibilities. This generous opportunity has enabled me to stretch my own potential, whilst embracing being part of a community that I can also view through a researcher lens.”
– Sasha Henriques, second year PhD student
Jerome Atutornu is a senior lecturer in radiography at the University of Suffolk and former healthcare professional, but more recently has been focussing on a PhD project based around attitudes and perspectives to genomics within Ghanaian communities. Jerome’s project has asked speakers of Twi and Ewe, in Ghana and in the UK, for their views on DNA data and privacy, whom they trust with this data, and if they would be willing to share it. By capturing and understanding global perspectives on attitudes to genomics we can move towards making both research practices and research benefits more equitable between communities in the Global North and Global South.
“I am interested in ensuring that genomics does not exacerbate existing health disparities by facilitating discoveries that will disproportionately benefit only the well-represented communities. There were times when I felt quite anxious about certain aspects of my PhD research. However, I have been amazed by the depth and breadth of the support available within the Engagement and Society team in Connecting Science, and more widely too. Looking back, I realise that there was no need to be anxious.”
– Jerome Atutornu, final year PhD student
We are delighted to support this talented group of research professionals as they establish and develop their careers, and look forward to seeing the impact their work has on research and healthcare practice in the UK and globally.
- This article was published in the Connecting Science annual review 2023.
- The image at the top of the page is a still from one of the video that forms part of Jerome Atutornu’s PhD project.