Title

Advancing Ethical Engagement and Benefit Sharing Within International Collaborative Genomic Research Partnerships in Africa

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Joseph Ali, JD
Work Title/Institution
Assistant Professor, Johns Hopkins Berman Institute of Bioethics and Bloomberg School of Public Health, USA
Name & Degree
Erisa Sabakaki Mwaka, MMed, MSoc, PhD
Work Title/Institution
Associate Professor, College of Health Sciences, Makerere University, Uganda

Introduction

Due to advances in genomic sequencing and reduced costs, the development of statistical techniques and technologies for analysis of large datasets, and a scientific interest in population-specific knowledge of the genetic and environmental bases of human diseases, Africa has witnessed an exponential increase in genomic research on the continent. The accumulation of vast amounts of samples and associated data offers opportunities for the scientific community and other stakeholders to translate knowledge into both commercial and noncommercial products. This has stimulated a range of questions and desires among scientists, research participants, policymakers, and funders, particularly in low- and middle-income countries. Guided by principles of fairness, solidarity, reciprocity, and epistemic justice (equity of participation in knowledge production, use, and circulation), many stakeholders expect the benefits of genomic research to be…

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Due to advances in genomic sequencing and reduced costs, the development of statistical techniques and technologies for analysis of large datasets, and a scientific interest in population-specific knowledge of the genetic and environmental bases of human diseases, Africa has witnessed an exponential increase in genomic research on the continent. The accumulation of vast amounts of samples and associated data offers opportunities for the scientific community and other stakeholders to translate knowledge into both commercial and noncommercial products. This has stimulated a range of questions and desires among scientists, research participants, policymakers, and funders, particularly in low- and middle-income countries. Guided by principles of fairness, solidarity, reciprocity, and epistemic justice (equity of participation in knowledge production, use, and circulation), many stakeholders expect the benefits of genomic research to be shared with those who provide genetic resources. However, most countries in Africa lack comprehensive ethico-legal frameworks to support the implementation of benefit sharing. The Human Heredity and Health in Africa (H3Africa) consortium, an international initiative that facilitates research into diseases on the African continent, and other organizations have attempted to address this gap by developing guidance documents for the ethical conduct of genomic research.

Various definitions of benefit sharing have been offered, including by Schoeder (2007) who defined benefit sharing as, “the action of giving a portion of advantages/profits derived from the use of human genetic resources to the resource providers to achieve justice in exchange, with a particular emphasis on the clear provision of benefits to those who may lack reasonable access to resulting healthcare products and services without providing unethical inducements.” Per the Human Genome Organization (HUGO) statement on benefit sharing and the Nagoya Protocol, to which several African countries are signatories, the benefits of genomic research, whether monetary or non-monetary, should be fairly and equitably shared with communities that participate in research. Monetary benefits may be realized through joint ventures or ownership of intellectual property rights, royalties or licensing fees (in the case of commercialization), sustained access to research funding, etc. Non-monetary benefits may include, but are not limited to, human capacity strengthening through training and skills development, community based social projects and public education, returning useful results or scientific information to research communities, infrastructure capacity building, and social recognition via shared authorship.

While one may justifiably believe that resource extraction without community benefit is a form of exploitation, establishing a deeper understanding for what fair benefit sharing means in each context often requires deliberate attention to community engagement and collaborative partnerships. Community engagement recognizes communitarian values and processes that are deeply entrenched in many African societies. One purpose of community engagement should be the inclusion of communities in processes for determining benefit sharing arrangements. Collaborative partnerships should recognize power differentials and other disparities and seek to address those differentials. Collaborators should also foster mutual respect and trust and encourage shared decision-making. While translating principles to practice is sometimes difficult, consensus guidelines clearly emphasize the importance of community engagement and mutually beneficial partnerships to advance equitable and meaningful international collaborative research for the benefit of society.

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Collection Header
Ethical engagement and partnership in international collaborative research
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Collection Header
Benefit sharing in international collaborative genomic research
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Tags
ethical engagement
benefit sharing
Africa
Collaborations
genomic research
H3Africa