ATTITUDES OF GHANAIAN PEOPLE TOWARDS GENOMICS AND SHARING GENOMIC DATA

Abstract

Advances in genomic sequencing technologies and massive investments in this area have enabled improvements in disease diagnosis, treatment and personalised care. There is more genetic diversity among people across the continent of Africa than across the combined population of the rest of the world. Yet the representation of this diversity is missing in many relevant contexts, including within the data that underpins gene analysis in genomic medicine services, within the samples analysed in genetic research globally, among the people who historically have participated in clinical research, and among the researchers and clinicians who do genetic research and deliver genomic medicine services. This means that not all populations, particularly people of African ancestry, are able to receive the full benefits of genomic medicine. There is a scientific need to increase the diversity of genomic data. Failure to address this has resulted in the creation of inequalities in genomic service provision, which is unjust. The success of genomic research and medicine 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. This dissertation 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. riangulation of the data showed that the studied Ghanaian public possesses science capital (the scientific imagination), which comes from their funds of knowledge drawn from their sociocultural lives, languages and complex circumstances. This is demonstrated in their insightful discussions about genomics, which draw on experiences in various circumstances, including those derived from living ‘out of place’ in the Ghanaian diaspora. Of note is the general willingness to donate DNA and medical data for research and hope for the future despite an expressed lack of trust in the current scientific community to use such data ethically. Notwithstanding a lack of familiarity with genomics demonstrated in the online surveys, the participants in the focus groups had very sophisticated conversations about what they felt genetic technology could offer them. Their insights presented legitimate knowledge that forces scientists to move beyond deficit and Orientalist theorising – when given the opportunity, the Ghanaian public is skilled in making meaning of the technology and predicting how it could be utilised. These data inform a set of policy recommendations for genomic scientists who want to increase the representation of the Ghanaian public in genetic research, including practical information that could be added to consent forms to demonstrate trustworthy behaviours that the Ghanaian publics expect scientists to show. This, in turn, contributes to addressing current inequities in genomic medicine.