[task] Do we need separate ethics for this repository? - Stakeholder feedback
Clare O'Donoghue + @cassag (19/08/21)
CUREC MRI approved procedure (AP17)
- Consent form: "I agree for research data collected in this study to be given to researchers, including those working outside of the UK and the EU, to be used in other research studies. I give permission for data from this study to be used in publication. I understand that any data and/or brain images of me that leave the Centre will be de-identified."
- PIS: "If applicable: I/We would like your permission to use de-identified data in future studies, and to share data with other researchers (e.g. in online databases). All personal information that could identify you will be removed or changed before information is shared with other researchers or results are made public."
- Is the wording above sufficient?
- Data will not be anonymous
- Some participants will be recruited into WIN studies via NHS, however they will be recruited into the database via the study, not directly via NHS.
WIN Ethics check list will need updating
How will we confirm consent is in place before making data public? Easiest if it is machine readable, but then easier to link to WIN Scan ID.