Trends in Genetics
Volume 36, Issue 12, December 2020, Pages 895-896
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Science & Society
Challenges of Genetic Data Sharing in African Studies

https://doi.org/10.1016/j.tig.2020.07.010Get rights and content

Data sharing is a valuable aspect of science and required by most funding bodies and journals. However, the national regulatory guidelines of many African nations do not explicitly allow for broad genetic data sharing. Given these restrictions, there is a need to reconsider these policies and propose creative solutions.

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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.

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