What is it about?
This research is situated within the wider studies that explore ethical considerations surrounding genomic technologies and practices as well as the ethical issues related to diversity across broader health studies. The objective is to explore the ethical issues arising from attempts to diversify genomic data and include individuals from underserved groups into studies exploring the relationship between genomics and health.
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Photo by National Cancer Institute on Unsplash
Why is it important?
The study reveals that ethical issues are interconnected across structural factors and research practices. Structural issues include failing to engage with politics of knowledge production, existing inequities, and their effects on how harms and benefits of genomics are distributed. Issues related to research practices include a lack of reflexivity, exploitative dynamics, and the failure to prioritise meaningful co-production.
Perspectives
The overrepresentation of genomic data from individuals of Northern-European descent in biobanks world-wide is now a well-recognised issue. Despite global efforts to improve the representation of individuals from other ancestry groups this skewing remains, and various populations remain underrepresented and underserved in commonly used repositories worldwide. It is crucial to address this issue as it can lead to inequities in genomic medicine, and ultimately in health inequalities.
Dr Luiz Valerio P. Trindade
IPIE - International Panel on the Information Environment
Read the Original
This page is a summary of: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis, Cambridge Prisms Precision Medicine, September 2023, Cambridge University Press,
DOI: 10.1017/pcm.2023.20.
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