Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these are commercially, scientifically or symbolically valuable and in need of protection against exploitation. Although it is appealing as a response to increasing concerns regarding sample export, there are a number of important conceptual problems relating to the term. It is not clear, for instance, whether it is appropriate that ownership over human genomic samples should rest with national governments. Furthermore, ethnic groups in Africa are frequently spread across multiple nation states, and protection offered in one state may not prevent researchers from accessing the same group elsewhere. Lastly, scientific evidence suggests that the assumption that genomic data is unique for population groups is false. Although the frequency with which particular variants are found can differ between groups, such genes or variants per se are not unique to any population group. In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent.
- ethics sample export
- genomic sovereignty
- collaborative global health research
- research ethics
- genome mapping
- genetics and human ancestry
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Read the full text or download the PDF:
Other content recommended for you
- Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
- Guideline for feedback of individual genetic research findings for genomics research in Africa
- Should institutions fund the feedback of individual findings in genomic research?
- Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities
- Tiered informed consent: respecting autonomy, agency and individuality in Africa
- Cancer research across Africa: a comparative bibliometric analysis
- A framework for the promotion of ethical benefit sharing in health research
- An analysis of the African cancer research ecosystem: tackling disparities
- Who is telling the story? A systematic review of authorship for infectious disease research conducted in Africa, 1980–2016
- The Chronic Kidney Disease in Africa (CKD-Africa) collaboration: lessons from a new pan-African network