Trends in Genetics
Science & SocietyChallenges of Genetic Data Sharing in African Studies
Section snippets
Ethical Implications of Research in Africa
Recently, the NIH supported a unique mechanism for funding research in Africa: the H3Africa consortiumii. This partnership between the NIH, Wellcome Trust, and the African Society of Human Genetics sought to provide funding for genetics research in the cradle of mankind. Indeed, some of the greatest of the great global health crises, combined with genetic variability, are concentrated in Africa, with these populations being sadly understudied [6,7]; thus, such mechanisms and partnerships are
Broad Implications for Research Worldwide
While the focus here is on research based in Africa, the implications extend to studies based in other countries. Many ongoing genetic studies enrolled subjects before the consideration of broad genetic data sharing [3]. Thus, the concept of data sharing was not included in consent forms and, since these study subjects were enrolled decades ago, reconsent is not feasible. In addition, close examination of regulatory guidelines in Europe reveals that data deposition may conflict with the core
Implications and Recommendations
Perhaps it is time to rethink these data-sharing policies. In some ways, the development and implementation of these policies before the authorization of international regulatory guidelines perpetuate the ‘colonialism’ that continues to be a concern for African scientists [5]. The strict requirement of data sharing might undermine research study recruitment efforts in under-represented minority populations, because it is viewed as objectionable in populations that have experienced
Concluding Remarks
In summary, while there is a strong justification for the existence of data-sharing policies, this ‘one size fits all’ approach is unfeasible in many situations. As reviewed here, African national regulatory guidelines do not clearly allow for broad genetic data. Therefore, journals and funding bodies should consider this reality in enforcing policy, so as to not create inequities in science.
References (15)
The missing diversity in human genetic studies
Cell
(2019)Are public repository requirements exacerbating lack of diversity?
Trends Genet.
(2020)The H3Africa policy framework: negotiating fairness in genomics
Trends Genet.
(2015)- et al.
Data sharing
N. Engl. J. Med.
(2016) Realities of data sharing using the genome wars as case study - an historical perspective and commentary
EPJ Data Sci.
(2013)Practical barriers and ethical challenges in genetic data sharing
Int. J. Environ. Res. Public Health
(2014)Credit data generators for data reuse
Nature
(2019)
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2023, Briefings in BioinformaticsA roadmap to increase diversity in genomic studies
2022, Nature MedicineAfrican researchers do not think differently about Open Data
2022, Frontiers in Research Metrics and Analytics
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