Handling of participant withdrawals in the future
Following up on this FAQ on the recent sample withdrawals process and comments made at the UKB Scientific Conference yesterday, I have some queries:
1. Is this new automated withdrawals process within the RAP always going to be used going forward?
2. Will we be requested to run this automated withdrawals process every time a new participant withdraws, or will these come through less regularly (i.e. alongside major data releases) with sample withdrawal lists emailed to individual users as has been done in the past?
This would be helpful to know for forward planning, particularly on how to handle user-generated files containing individual level data which aren't going to automatically be filtered by this automated sample withdrawal process, i.e. for myself, does it make sense for me to write code that pulls down the most up-to-date list of consented participants from the parquet database to filter files saved to project storage (cost here being development time I could otherwise be using to do science) or to just simply re-extract every intermediate saved file from scratch (pipelines I have already set up, but would likely be expensive enough compute-wise if this needs to be run on a semi-regular basis).
Comments
4 comments
I am also curious about the answer to this. The MTA says that investigators should handle withdrawal requests “promptly and appropriately” but I think interpretation of that was left up to the investigator. The new procedures change that for dispensed files but it seems unclear whether new compliance obligations (like the 90 day grace period) also apply for user generated files.
Thank you for your query.
The automated withdrawals process will be used for the foreseeable future.
There is no need to run the automated withdrawals process every time a new participant withdraws, but please ensure you do run it before the end of the grace period (this also applies to any user generated files). This can be found in the settings tab of your project.
Kind regards,
Luke
I think this will require significant changes in how some investigators work and this clarification probably needs to be shared more broadly than this forum. It should probably be written into the MTA for new projects.
Regarding the timing of withdrawal processing, I think what needs to be clarified is the expected cadence of withdrawal notifications for investigators, which is separate from the length of the grace period. In the past this has been unpredictable – i.e. our recent notifications were 2023-05-03, 2023-09-05, 2024-12-17, 2025-08-18.
Hi David
Thanks for your suggestion regarding the withdrawal process and the MTA. I’ve passed this feedback onto our Legal Team for their consideration.
Many thanks,
Matt
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