Table 1.
Principle | Description/Definition | Potential Application in Genomics Research |
---|---|---|
Solidarity | Recognition of the interdependence of members involved in a joint activity. | Global collective action to ensure that African populations are represented in genomics studies and that these studies 1) prioritise health conditions that contribute to the disease burden in Africa and 2) build capacity for genomics and genomics medicine Populations in Africa should contribute samples and data for global genomics studies by consenting for data sharing All stakeholders should share experiences, knowledge, and resources for the common good |
Open Sharing | Ubuntu embodies the philosophical concept of an open society whereby community members demonstrate a selfless commitment to share what they have for the benefit of their community | No stakeholder group should hoard genetic resources (data, samples) or products (IPs, patents, publications etc) for their personal gain at the expense of others Genomics projects should share samples and data with other researchers in ways that allow for maximum use of samples and data towards improving health of populations in Africa IPs and patent arising from the use of genomic data in Africa should not create access barriers to precision medicine by populations in Africa African researchers should share research data for the advancement of science and this contribution should be acknowledged by secondary users of the data for example in research publications, patents, and the development of new tools |
Reciprocity | Human interactions are contingent upon mutual exchange Persons within a community have an obligation to be responsive to the needs of others |
Genomics initiatives should define a benefit sharing plan that recognises the collective action of all stakeholder groups. communities should be provided access to the benefits of genomics studies including access to genomic health care interventions developed using data from the communities. African researchers should be supported to make maximum use of the samples and genetic data from Africa |
Inclusivity | Inclusivity is consciously encouraged in decision-making processes. Two forms of inclusivity are considered indispensable: representation of all stakeholder groups (formal representation); and the representation of the will of all stakeholder groups (substantive representation). | The voices of all stakeholders should be included in decision-making mechanisms. Efforts should be made to include vulnerable populations and stakeholder groups that may be affected by a decision but typically left out in decision-making processes (sample provid ers, African researchers, junior researchers) |
Deliberative and consensus decision-making | Participatory decision-making characterised by, consensus, substantive representation, and willing suspension of disagreement. | Decision making processes should be structured in such a way that no stakeholder group affected is able to disproportionately influence the final decision (attention should be paid to the motivations of ethics experts; funders, researchers and other powerful stakeholders) and final outcome should be by consensus Public/patient engagement activities that adopt deliberative processes are required when developing ethics policies for genomics projects in Africa |
Accountability | Engaging with relevant stakeholders, not just as key informants but also as agents of change capable of addressing concerns and issues that affect their community. | Researchers have an obligation to feedback the outcome of research projects to study communities, including how samples and data have been, or are being, used to address the health needs of study communities. Study communities and research participants should be informed of how their samples and data have been used and this should be done in ways that allow research participants or study communities to provide feedback to researchers |
Mutual Trust | Trust is fostered through respect and recognition of the contribution of all members of the community and can be achieved through demonstration of long-term consistency in words and actions | Genomics projects should recognise the interdependence of all stakeholders and acknowledge that each is making a significant contribution to the success of the project through for example shared authorship, joint ownership of patents and recognising the expertise of each researcher. All stakeholders should keep to promises made either to other stakeholders or to research participants during the consent process/ public engagement activities. |