Commit f3dc9b67 authored by Cassandra Gould van Praag's avatar Cassandra Gould van Praag
Browse files

add place holders for new docs

parent 33cb7b76
......@@ -14,6 +14,12 @@ Inspired by Huijser, Dorien, Achterberg, Michelle, Wierenga, Lara, Van't Veer, A
Created using materials from Das et al, 2019, [MCIN Open Science Guidance: Data Preparation Checklist](https://loris.ca/MCINOpenScienceGuidance_DataPrepChecklist.pdf)
> To Add:
- Donders
- EU Brain data sharing;
- Open Brain Consent
- http://www.sussex.ac.uk/psychology/brainshare/index
Materials within this repository were developed with the support of the [Open Life Sciences (OLS) Mentoring Program](https://openlifesci.org), with the kind assistance of [Naomi Penfold](https://github.com/npscience).
Other resources have also been developed following example materials developed by [The Turing Way](https://the-turing-way.netlify.app/welcome).
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......@@ -224,3 +224,4 @@ Add below any comments about each of the steps in this process.
## New issues/actions
1) Incorporate Open Brain Consent advice into WIN participant information sheets and consent forms - Added to repo as issue #11.
2)
# Open data sharing consent form
The fields below should be included on a separate consent form which is used to record the participant's consent to sharing their data openly on the WIN XNAT server.
# Open data sharing participant information sheet
Dear Participant,
As well as participating in the current research project, you are being invited to add your data to an "open data repository" for other researchers outside of the Univerity of Oxford to access. Before you decide, it is important for you to understand what the repository is and its function. Please take time to read the following information carefully. We would like to emphasise that giving your consent for your data to be added to the repository is optional and is not a requirement to participate in the current research project you have been recruited to.
This information sheet contains UK-GDPR-specific wording that relates to privacy implications due to the intention of processing and sharing your participant’s data. As such, this information should be considered to be the [GDPR Privacy Notice](https://www.england.nhs.uk/nhse-nhsi-privacy-notice/what-is-a-privacy-notice/).
> A privacy notice should identify who the data controller is, with contact details for its Data Protection Officer. It should also explain the purposes for which personal data are collected and used, how the data are used and disclosed, how long it is kept, and the controller’s legal basis for processing.
## What is an "Open Data Repository"?
<mark>While the collection</mark>, use and storage of your data are done for the purpose of conducting the study to which you are currently participating, these data might also be used for other future research projects in the field of medical and cognitive neuroscience. This includes data from your brain and/or other scans, and may also include test results from the study you took part in, family and medical history, and also data such as gender and age.
...
## How will WIN XNAT Work?
> WIN Researchers add data with consent. Other researchers are invited to access and use in a way that benefits their research interests. Always under the agreement that it is non-commercial.
## What will happen to my data?
### Confidentiality of your data
To the best of our knowledge, the data we release will not contain information that can directly identify you using reasonable means. To protect your privacy, the data will be given a code, so people will not know your name or which data are yours. Your name, but also other information that can directly identify you, will be omitted. [Identifiable facial features on the brain scans will also be removed]. Data can only be traced back to you using information only available to the data processor (i.e. people involved in the study). This information will remain safely stored in the local research institute. The data cannot be traced back to you in reports and publications about the study. However, by using additional data linked to your name (for example brain scans obtained from your medical records) one could potentially associate your imaging or other information in our database back to you. The risks of accessing such data from our servers have however been assessed and are considered to be low (see the university/centre Data Privacy Impact Assessment @<URL>).
### Retention period of your data
There is no plan to delete your data as they can be re-used for legitimate research interest. We will however re-evaluate every <number of years> years if it is worthwhile keeping them.
## What if I change my mind?
You can withdraw your consent to the use of your personal data at any time. This applies to this study and also to the sharing for future research. You have however to understand that once shared with other institutions, it is impossible to remove your data from such copies.
## Passing your data on to countries outside of the UK and European Union
Your encoded data can also be accessed by and sent to countries outside the EU. This is necessary so that non-EU based scientists can run analyses to verify the scientific results produced from this study or for future unrelated research in the field of medical and cognitive neuroscience. In those countries, the EU rules on the protection of your personal data do not apply. However, your privacy will be protected at an equal level, by means of a [Data User Agreement](./data-usage-agreement.md).
## More information about your rights regarding processing of your database
For general information about your rights regarding the processing of your personal data, you can consult the website of the <Institution> Data Protection Authority.
If you have questions about your rights, please contact the person responsible for the processing of your personal data. For this study, that is:
<contact information> (see Appendix for contact details)
If you have questions or complaints about the processing of your personal data, we advise you to first contact the research location. You can also contact the Data Protection Officer of <Institution> (see the contact details in Appendix ) or the <Institution> Data Protection Authority.
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