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Needs to have links that match those on the HREC website

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Ethics and data protection from Library Research Support 

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Ethics and data protection from Library Research Support 

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Ethics and data protection | Library Research Support (open.ac.uk)

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Obtaining research data from human participants places ethical and legal obligations on researchers. The need to respect confidentiality and privacy can seem to conflict with funders' expectations that data will be shared wherever possible, but with careful planning, it is possible to share research data from human participants. A combination of gaining consent for sharing, de-identifying or anonymising personal data, and controlling access, can ensure long term access to sensitive data.

When giving consent, participants need to understand and give explicit permission for possible future uses of their data, this should include details of any anonymisation, the extent of planned sharing, future data storage and conditions of access. Once data have been fully anonymised, participant permission is not needed for further work.

Data must be handled and stored with particular care when they contain personal or sensitive information; see the advice on this site for safeguarding research data.

Careful anonymisation can ensure that meaning within the data is not lost. There is good advice and guidance from the specialist sites listed below.

Controlled access enables sharing data with bona fide researchers without anonymisation compromising meaning in the research data.

Relevant to these issues is the General Data Protection Regulation (GDPR), which came in to force across Europe on 25th May 2018. Replacing the UK Data Protection Act 1998, GDPR strengthens the rights of research participants with regard to their personal data.

Our guide listed below, GDPR - How does it affect Research Data Management and data sharing? highlights the key issues for researchers and draws together useful resources and contacts. See also the UK Data Service GDPR Research and Archiving FAQs listed below.

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Obtaining research data from human participants places ethical and legal obligations on researchers. The need to respect confidentiality and privacy can seem to conflict with funders' expectations that data will be shared wherever possible, but with careful planning, it is possible to share research data from human participants.

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is there an FAQ about the withdrawal of participants' data and guidance to help the applicant think about the effect of withdrawal on their data processing/management if withdrawal happens at certain stages of data collection?

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is there an FAQ about the withdrawal of participants' data and guidance to help the applicant think about the effect of withdrawal on their data processing/management if withdrawal happens at certain stages of data collection?

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FAQs should contain  content rather than simply links to other documents. (which also have links to links..)

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FAQs should contain  content rather than simply links to other documents. (which also have links to links..)

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One possibility is a pop-up index of things that people need to consider - a way of navigating the site for people who've never done an application before. It could start with the two basic forms (Checklist and full Application Form), which I always struggle to find, and then have clickable links to Data Protection, Research Data Management, etc.

It's arguable that RDM should be under a separate heading from DP on the front page, since more applicants seem to master DP than RDM.

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Yes – again, in the DP 'Research guidance' document, to avoid multiple sources.

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Suggest data sharing with other organisations should be covered in the DP 'Research guidance' website, so that everything is in one document and we do not duplicate.

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It seems we need to check whether this document is up to date/how often updated...

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It seems we need to check whether this document is up to date/how often updated...

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Age of children re: consent refers to under/over age 13. The European agreed age is 18 with negotiation between 16 and 18 as to how consent (as well as assent) is best gained according to the setting.

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Should we be giving advice about anonymisation, pseudonymisation and deidentification and, if so, where?

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Should we be giving advice about anonymisation, pseudonymisation and deidentification and, if so, where?

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Where should advice on data sharing (as opposed to data transferring) across institutions fit on the website?

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Where should advice on data sharing (as opposed to data transferring) across institutions fit on the website?

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Need to start thinking about this at the very beginning/grant proposal stage.

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STARTER POST: The Library Research Team also have advice on Data Protection...should we point to this more explicitly and, if so, where/how?

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STARTER POST: The Library Research Team also have advice on Data Protection...should we point to this more explicitly and, if so, where/how?

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Obtaining research data from human participants places ethical and legal obligations on researchers. The need to respect confidentiality and privacy can seem to conflict with funders' expectations that data will be shared wherever possible, but with careful planning, it is possible to share research data from human participants. A combination of gaining consent for sharing, de-identifying or anonymising personal data, and controlling access, can ensure long term access to sensitive data.

When giving consent, participants need to understand and give explicit permission for possible future uses of their data, this should include details of any anonymisation, the extent of planned sharing, future data storage and conditions of access. Once data have been fully anonymised, participant permission is not needed for further work.

Data must be handled and stored with particular care when they contain personal or sensitive information; see the advice on this site for safeguarding research data.

Careful anonymisation can ensure that meaning within the data is not lost. There is good advice and guidance from the specialist sites listed below.

Controlled access enables sharing data with bona fide researchers without anonymisation compromising meaning in the research data.

Relevant to these issues is the General Data Protection Regulation (GDPR), which came in to force across Europe on 25th May 2018. Replacing the UK Data Protection Act 1998, GDPR strengthens the rights of research participants with regard to their personal data.

Our guide listed below, GDPR - How does it affect Research Data Management and data sharing? highlights the key issues for researchers and draws together useful resources and contacts. See also the UK Data Service GDPR Research and Archiving FAQs listed below.

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Obtaining research data from human participants places ethical and legal obligations on researchers. The need to respect confidentiality and privacy can seem to conflict with funders' expectations that data will be shared wherever possible, but with careful planning, it is possible to share research data from human participants.

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STARTER POST: Please identify questions about data protection we should a) agree a consistent response to and b) communicate on our website/resources eg under our FAQs?

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STARTER POST: Please identify questions about data protection we should a) agree a consistent response to and b) communicate on our website/resources eg under our FAQs?

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STARTER POST: The Data Protection Team have a link to useful advice and resources at (you will need to sign in to access this)...should we point to this more than we do?

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STARTER POST: The Data Protection Team have a link to useful advice and resources at (you will need to sign in to access this)...should we point to this more than we do?

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STARTER POST: The Data Protection Team also has advice about Information and Records Management here (you will need to sign in to access this)...should we point to this more explicitly and, if so, where/how?

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STARTER POST: The Data Protection Team also has advice about Information and Records Management here (you will need to sign in to access this)...should we point to this more explicitly and, if so, where/how?

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STARTER POST: Key advice on the Data Protection Team about Information Security is hosted at (you will need to sign in to access this link)...do we need to change how we refer to any aspect of this and, if so, where on our site?

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STARTER POST: Key advice on the Data Protection Team about Information Security is hosted at (you will need to sign in to access this link)...do we need to change how we refer to any aspect of this and, if so, where on our site?

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STARTER POST: The current data protection advice on the HREC website is hosted here...what do you think should change and how?

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STARTER POST: The current data protection advice on the HREC website is hosted here...what do you think should change and how?

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It is very important that research at the OU is legal, ethical and enacted responsibly. If your research project will involve the collection or use of personal data, please refer to the OU Data Protection (internal only) site to assess if your research is considered high risk, as you may be required to complete a Data Protection Impact Assessment (DPIA). To establish whether a DPIA is needed, first complete the DPIA screening questions (internal only), and then complete the DPIA template (internal only) if necessary. Further information about Data Protection in Research can be found in the Research Guidance document (internal only).

In addition, you will need to contact your Information Governance Liaison Officer (internal only) if you are collecting personal data as part of your research, to get your research added to the Information Asset Register (internal only).

Research Data Management

Research Data Management concerns the management, preservation and sharing of any research data which are collected, created or used during the course of your research.

OU researchers and research students are expected to adhere to the OU Research Data Management Policy as well as any other relevant funder policies, by creating a Data Management Plan, managing data responsibly throughout their lifecycle and wherever possible by sharing research data in a trusted data repository.

Guidance on all aspects of Research Data Management can be found on the OU Library Research Support website.

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It is very important that research at the OU is legal, ethical and enacted responsibly. If your research project will involve the collection or use of personal data, please refer to the OU Data Protection (internal only) site to assess if your research is considered high risk, as you may be required to complete a Data Protection Impact Assessment (DPIA).