About this Research Topic
To date, the vast majority of genome-wide association studies (GWAS) have been carried out in people of European ancestry. This imbalance limits our general understanding of the genetic architecture of disease risk, thereby exacerbating existing health disparities, particularly for non-European populations. This realization has recently motivated efforts to diversify genetic studies by increasing data collection from historically underrepresented populations. While this is a welcome shift, there seems to be a lack of conversation around how to go about doing this in a way that doesn’t exploit, undermine, or cause harm to underrepresented populations, which also tend to be vulnerable.
In this Research Topic, we want to invite data-driven articles and perspectives from researchers from and/or working with populations currently underrepresented in genetics research with a focus on highlighting the often “behind-the-scenes” work to engage and form relationships with communities, the potential risks of current approaches, and solutions. This will include questions such as, but not limited to:
• Which populations should be prioritized and why?
• Who should own the data in biomedical research and ancient DNA studies?
• How do we protect marginalized communities from exploitation?
• How should we balance the needs of the scientific community with building capacity and trust in marginalized communities?
• Is consent in genetics studies truly informed?
• Is it equally informed for different groups and across countries?
• What ethical challenges do we foresee in genetic studies that we have so far not encountered?
• What can we do as a community to promote researchers from underrepresented communities and how should we support these researchers as they navigate academia?
We welcome Original Research, Systematic Review, Review, and Mini-Review articles, Policy and Practice Review, Perspective, Policy Brief, Brief Research Report, and Opinion pieces.
In this Research Topic, we want to invite data-driven articles and perspectives from researchers from and/or working with populations currently underrepresented in genetics research with a focus on highlighting the often “behind-the-scenes” work to engage and form relationships with communities, the potential risks of current approaches, and solutions. This will include questions such as, but not limited to:
• Which populations should be prioritized and why?
• Who should own the data in biomedical research and ancient DNA studies?
• How do we protect marginalized communities from exploitation?
• How should we balance the needs of the scientific community with building capacity and trust in marginalized communities?
• Is consent in genetics studies truly informed?
• Is it equally informed for different groups and across countries?
• What ethical challenges do we foresee in genetic studies that we have so far not encountered?
• What can we do as a community to promote researchers from underrepresented communities and how should we support these researchers as they navigate academia?
We welcome Original Research, Systematic Review, Review, and Mini-Review articles, Policy and Practice Review, Perspective, Policy Brief, Brief Research Report, and Opinion pieces.
Keywords: underrepresented populations, genetics, ethics, consent, data privacy, data ownership
Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.
