PhD candidate Jerome Atutornu’s research empowers discovery scientists working in genetics to consider and navigate the ethical and societal concerns of the Ghanaian publics by understanding what shapes attitudes towards genomics and data sharing. Through the delivery of evidence-based policy on public engagement, scientists are provided with a toolkit for how to conduct public engagement at the early stages of scientific discovery so that they can partner with Ghanaian publics to co-design research and recruitment.
The success of genomic research depends on the availability of large amounts of data that can be shared across scientific, geographical and legal jurisdictions. These data are derived from the willingness of the public to donate their data. The success of the genomics industry (nonprofit, for-profit, research and clinical) depends on public acceptance of the use and sharing of their data, which depends on public awareness of and familiarity with genomics across various populations, including those from across the African continent.
The thesis explored the attitudes of the Ghanaian public towards genomics and genomic data sharing. Using a mixed-methods study design, this work interpreted findings from eight focus groups (n = 40) and a structured survey delivered in the Ewe and Twi languages to 987 people living in Ghana and the UK. The data suggests that the group studied have moved to a post-trust era where legal assurances are sought as a
condition for donating data to the scientific community rather than mere trust. These data inform a set of policy recommendations for genomic scientists on how to conduct ethical community engagement when aiming to increase the representation of Ghanaian publics in genetic research.
This study has also resulted in the creation of new translated words for “DNA information” in the languages of Ewe and Twi. These are Dzɔdzɔmekadonu Awob and ɔasu (DzorDzormekadonu and Awoborasu, respectively). These words are periphrastic (derived from the combination of several component words), such as ‘that within our blood which shows how we are linked’. Further, in seeking to find common ground during communications, the word ‘blood’ would serve as a key metaphor in orienting people to the subject of genetics.
Translation:
MEMBER OF THE PUBLIC FROM GHANA
“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.”