Framework for African Genomics and Biobanking
▻https://h3africa.org/9-news/361-framework-for-african-genomics-and-biobanking
The number of genomics research and biobanking projects taking place on the African content is growing steadily. A critical feature of such research is the broad sharing of data and samples for secondary use by investigators who were not originally involved in their collection. Such ‘open science’ holds considerable potential for facilitating scientific discovery but it also evokes important ethical challenges that need to be addressed for its successful implementation, not least where research takes place in the African research context, which evokes questions about equity and fairness. Whilst the ethical and regulatory constructs to allow sharing and re-use of scientific resources are being developed, it is not surprising that the ethical review and regulatory infrastructure in Africa does not yet accommodate sharing and secondary use. Yet African people’s broad genetic diversity could be a key to addressing the high burden of disease in the continent and Africa offers many unique opportunities to advance an ethic of sharing. This Framework aims to set out the principles and actions that should be considered as pertinent ethical concerns for genomic research and biobanking in Africa.
The Framework takes account of pertinent concerns raised regarding scientific and medical research in Africa. One such concern is the perception that research collaborations have been largely unfair for African researchers and participants. This Framework seeks to foster a progressive regulatory ethos that will empower African research participants, communities and researchers to engage with, and benefit from, genomic research and biobanking in a fair and mutually beneficial manner.
This Framework is inspired by communal or solidarity-based worldviews that are important in many African countries. Such worldviews recognize that individuals are shaped by their relations to people around them, and emphasize respectful and harmonious relationships between individuals. It places central importance on reciprocity, consultation and accountability as key ethical values. This worldview would suggest that sharing to contribute to the ultimate wellbeing and humanness of others would be broadly supported in Africa. But such sharing must always be matched with reciprocity – i.e. as much as the individual contributes to the community, the community also contributes to the individual’s sustainable wellbeing. Similarly, sharing should happen responsibly, with input from all those affected and with mechanisms by which to hold research teams accountable. By supporting genomics research in this way, African populations could contribute to cutting edge research, which, though expensive at the moment, has strong potential for better returns in reduced health care costs from diseases amenable to improved control as a result of a better understanding of their genomic determinants.
#Médecine #Biotechnologies #Banques_de_gènes #Ethique #Afrique