Abstract
Genomic research and biobanking are increasingly being conducted in the context of collaborations between researchers in high-income countries and those in low- and middle-income countries. Although these scientific advancements have presented unique opportunities for researchers to contribute to cutting-edge scientific projects and address important health problems, they have also challenged existing ethical and regulatory frameworks, particularly in sub-Saharan Africa. Broad consent is a model that allows the use of human biological samples and associated data in future research that may be unrelated to the original study. Drawing on emerging perspectives in low- and middle-income countries, we argue that broad consent is equivalent to consent to governance and that a robust governance framework for genomics and biobanking should seek to promote global health and research equity and take into account five key elements: respect, authentic community engagement and trust building, the preservation of privacy and confidentiality, feedback of results, and capacity strengthening.
Original language | English |
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Pages (from-to) | 375-393 |
Number of pages | 19 |
Journal | Annual Review of Genomics and Human Genetics |
Volume | 17 |
DOIs | |
Publication status | Published - 2016 |
Externally published | Yes |
Keywords
- Africa
- LMICs
- biobanks
- broad consent
- genomic research