Genomics England
Newborn Genomes Programme: a dialogue with ethnic minority community sector organisations
Challenge
The big data era poses new challenges for ensuring the ethical robustness and equity of biomedical research. As a case in point, the NHS-embedded Generation Study, which is being delivered by Genomic England’s Newborn Genomes Programme (NGP), will sequence the genomes of over 100,000 newborns to evaluate the utility and feasibility of screening newborns for a larger number of childhood-onset rare genetic conditions. To support its aim of achieving a diverse range of participants for its study, Genomics England wanted to understand how to communicate the Generation Study, and seek informed consent, in a way that is fair and inclusive, removing barriers to participation for parents from five ethnic minority communities: Black African, Black Caribbean, Pakistani, Indian, and Gypsy, Roma or Traveller communities.
Approach
We engaged 25 representatives of local voluntary and civil society organisations (VCSOs) working closely with the 5 ethnic minority communities (5 VCSOs per community), to help them understand the NGP and to co-develop recommendations for how to communicate the study and seek informed consent. Each VCSO participated in an online interview and an online co-creation workshop. To maximise the inclusivity of the research, we also curated a database of over 400 relevant VCSOs and invited them to share their perspectives via an email survey.
Impact
The research findings are directly influencing how the Generation Study is being communicated to potential participants, and other stakeholders. The findings have also provided principles for sustainable engagement with the voluntary and civil society sector, which Genomics England is using to guide its outreach and collaboration with voluntary organisations as it prepares to roll-out its study.
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