Interesting experiment in #citizenscience ethics this morning! Along with millions of others, I’ve been logging health with @timspector’s @join_zoe app since the start of the pandemic. They’ve produced accurate data on symptoms and case rates throughout 1/n.
My reward as a participant has been access to that data, which has been interesting and useful. Now the app wants permission to ask me questions associated with other diseases and conditions, investigating their link to nutrition. 2/n
But it also wants permission to use the data collected for commercial purposes (@join_zoe is a personalised nutrition effort). I found myself declining - I wouldn’t mind being asked to give specific permission for specific use of specific data, but not a blanket ‘yes’. 3/n
A note argues that commercial work is necessary to provide long term funding for the research, but it’s not a non-profit we’re being asked to share data with - people hope to make money here, as well as fund research 4/n
It made me think how careful #citizenscience projects that collect patient or medical data will need to be - maybe something that needs including in codes of ethics for public participation. Or maybe no one else cares, but it made me think 5/5
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