Benefit sharing has always been an issue of concern in health research, and can be thought of as being at the core of the principle of beneficence. However the rise of the human genomics research era, heralded by the Human Genome Project and the Open Data Access movements have heightened awareness and calls for benefit sharing.
The success of genomic research is contingent on access to and sharing of genetic resources (GR). The research raises legal and ethical issues including consent, privacy and community engagement. It also brings about questions of benefit and benefit sharing. The Nagoya Protocol regulates benefit sharing in non-human genetic research, but there is no comparable framework on benefit sharing in human genetic research. COVID-19 has brought issues of benefit sharing and equity of access to the benefits of research into the spotlight. There is a need to ensure equity of access to the benefits of research, but questions on how this could be governed remain. Consideration also needs to be given to defining benefit, accessing benefit, whether benefit differs between commercial and non-commercial genomic research, the funding of benefit sharing, and the perspectives of research participants in all of these issues. Furthermore, the digital sequence information (DSI) associated with GR is required to be openly accessed and available. This has led to legitimate questions of the implementation of benefit-sharing in cases of secondary use. Furthermore, an often overlooked perspective is the question of what the people want to see, rather than stipulations from scientists. This sentiment and the need to also document perspectives from communities is echoed by for example the Code of Research Ethics issued by the San People in South Africa.
This special issue will explore historical insights on the interplay between the open science movement, growth of genomics research and increased attention to the issue of benefit sharing as well as existing and new thinking around the issue of benefit-sharing across human genomics research. It will seek to explore perspectives on benefit and benefit sharing arising from the utilization of genetic resources and the associated DSI across different cultures and communities. It will unpack the historical and philosophical basis of benefit-sharing as a concept in genomics research, and consider the normative concepts that could enable benefit-sharing between participants and genomics researchers and between researchers themselves, albeit in north-south collaborative research, or any setting where one party has clear advantages over the other. It will challenge the status quo whereby participants are encouraged to share their data without any consideration of benefit sharing and unpack the meaning of the “public interest” and “public good”.
We welcome papers that reflect on the ethical, legal and social issues related to benefit sharing in genomics research. Perspectives from arts, biomedical and social science experts are welcome. This would cover the sharing and use of human genomic data and human pathogen data by industry and academic researchers (with or without potential for sharing for commercialization). We welcome papers that broadly discuss benefit sharing and may include:
● Governance of benefit sharing.
● Funding benefit sharing.
● Comparing benefit-sharing in public health emergencies vs regular research.
● Models of equitable benefit-sharing frameworks in multilateral vs bilateral agreements
● The conceptualisation of benefit and benefit sharing in different cultures and societies.
● How has benefit-sharing been, or in what ways could it be, operationalized in publicly-funded vs private for-profit funded initiatives?
● How is benefit sharing different between commercial and non-commercial genomics research?
● Evaluating when benefits should be shared throughout research projects (acquisition of GR, biobanking/barcoding/vouchering of GR, storage of DSI on public repository, downstream data analysis)
● Alternative normative concepts to benefit-sharing that captures the value of benefits and practices for appropriate benefit-sharing.
● To whom ought benefits accrue, and in which circumstances ought individual benefits be expected, if at all?
COI: Aminu Yakubu works with 54gene, a life science company that aims to improve access to precision medicine for African and other global populations
Benefit sharing has always been an issue of concern in health research, and can be thought of as being at the core of the principle of beneficence. However the rise of the human genomics research era, heralded by the Human Genome Project and the Open Data Access movements have heightened awareness and calls for benefit sharing.
The success of genomic research is contingent on access to and sharing of genetic resources (GR). The research raises legal and ethical issues including consent, privacy and community engagement. It also brings about questions of benefit and benefit sharing. The Nagoya Protocol regulates benefit sharing in non-human genetic research, but there is no comparable framework on benefit sharing in human genetic research. COVID-19 has brought issues of benefit sharing and equity of access to the benefits of research into the spotlight. There is a need to ensure equity of access to the benefits of research, but questions on how this could be governed remain. Consideration also needs to be given to defining benefit, accessing benefit, whether benefit differs between commercial and non-commercial genomic research, the funding of benefit sharing, and the perspectives of research participants in all of these issues. Furthermore, the digital sequence information (DSI) associated with GR is required to be openly accessed and available. This has led to legitimate questions of the implementation of benefit-sharing in cases of secondary use. Furthermore, an often overlooked perspective is the question of what the people want to see, rather than stipulations from scientists. This sentiment and the need to also document perspectives from communities is echoed by for example the Code of Research Ethics issued by the San People in South Africa.
This special issue will explore historical insights on the interplay between the open science movement, growth of genomics research and increased attention to the issue of benefit sharing as well as existing and new thinking around the issue of benefit-sharing across human genomics research. It will seek to explore perspectives on benefit and benefit sharing arising from the utilization of genetic resources and the associated DSI across different cultures and communities. It will unpack the historical and philosophical basis of benefit-sharing as a concept in genomics research, and consider the normative concepts that could enable benefit-sharing between participants and genomics researchers and between researchers themselves, albeit in north-south collaborative research, or any setting where one party has clear advantages over the other. It will challenge the status quo whereby participants are encouraged to share their data without any consideration of benefit sharing and unpack the meaning of the “public interest” and “public good”.
We welcome papers that reflect on the ethical, legal and social issues related to benefit sharing in genomics research. Perspectives from arts, biomedical and social science experts are welcome. This would cover the sharing and use of human genomic data and human pathogen data by industry and academic researchers (with or without potential for sharing for commercialization). We welcome papers that broadly discuss benefit sharing and may include:
● Governance of benefit sharing.
● Funding benefit sharing.
● Comparing benefit-sharing in public health emergencies vs regular research.
● Models of equitable benefit-sharing frameworks in multilateral vs bilateral agreements
● The conceptualisation of benefit and benefit sharing in different cultures and societies.
● How has benefit-sharing been, or in what ways could it be, operationalized in publicly-funded vs private for-profit funded initiatives?
● How is benefit sharing different between commercial and non-commercial genomics research?
● Evaluating when benefits should be shared throughout research projects (acquisition of GR, biobanking/barcoding/vouchering of GR, storage of DSI on public repository, downstream data analysis)
● Alternative normative concepts to benefit-sharing that captures the value of benefits and practices for appropriate benefit-sharing.
● To whom ought benefits accrue, and in which circumstances ought individual benefits be expected, if at all?
COI: Aminu Yakubu works with 54gene, a life science company that aims to improve access to precision medicine for African and other global populations