Update June 2022
This research is complete - see results for more info!
Update Nov 2021
This survey is complete and currently in analysis and write-up phases. You can see interim result reporting at my Data for Policy 2021 talk page
Update July 2021
After a long period of struggling to recruit, I’ve managed to get an amendment from my ethics board allowing me to invite people directly to participate, so I’m giving this study a bit of an additional push. This also will give us the chance to see if subsequent waves have any differences compared to wave one, when this study was launched.
Hi folks! I’m researching attitudes and challenges in COVID-19 related data access and data sharing, from a biology/bioinformatics research software engineer perspective.
My research question will explore:
In times of a pandemic or epidemic when rapid response is required, what are attitudes towards pathogen-related data sharing and data access? In particular:
- Are these data licenced in a way that permits re-use and redistribution?
- Are they made available in ways that are easy to download and re-use, e.g. API or bulk download, machine-readable with relevant metadata?
- What response do various communities have to these restrictions?
Data types I am interested in: Data that have no strong ethical reasons to keep private, such as virus omics data and infection/death/recovery rates by geographic region.
Data that are out of scope: all private data that can not be shared easily, such as clinical personal data, including host omics data (e.g. human genomic data as opposed to virus sequence data), location data, and contact tracing.
How you can help:
- Share the preprint: https://doi.org/10.48550/arXiv.2205.12098
- THIS IS NOW CLOSED Sign up to do an interview:
- Share word with others via Twitter. You can retweet this tweet.
I want to know more!
- You can read more about the study in the participant information sheet - apologies if it’s a bit dry!
- GDPR Notice
- Data management plan
Where / when?
I’m based in the UK, and can comfortably schedule chats via Zoom anytime between 08:00 UK time and 22:00 UK time. Given the nature of the pandemic, all chats will be online and not face-to-face.