At Genomics England, our vision is a world where everyone benefits from genomic healthcare.
From the latest research to the lived experiences of those affected by rare conditions and cancer, Behind the Genes brings you closer to the people behind the science.
Each month, we release a deep-dive episode, alongside our Genomics 101 series - short explainers designed to make complex terms in genetics and genomics easier to understand.
Episodes
Wednesday Feb 22, 2023
Wednesday Feb 22, 2023
On this episode, Lyra Nightingale, our ethics lead at Genomics England, is joined by Professor Anneke Lucassen and Dr Faranak Hardcastle in a deep discussion about ethics and data. They discuss the neutrality of data, cultural humility in research, the role of structural racism in science and the role of co-production in diversity.
You can read our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Professor-Anneke-Lucassen-and-Dr-Faranak-Hardcastle.docx
"Data is not neutral, or objective, because they don't exist in a vacuum. And they are produced by processes that we put them through, we curate them, we select them, collect them, clean them, edit them, and classify them and then end up analysing them."
References:
- Bowker, Geoffrey C., and Susan Leigh Star. Sorting things out: Classification and its consequences. MIT press, 2000.
- Gitelman, Lisa, ed. Raw data is an oxymoron. MIT press, 2013.
- Ruppert, Evelyn, and Stephan Scheel, eds. Data practices: Making up a European people. MIT Press, 2021.
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