DRI Introductory Training: Consent Forms and Anonymisation
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This presentation was delivered by DRI Policy Manager Dr Aileen O'Carroll as part of a Digital Repository of Ireland (DRI) Introductory Training seminar aimed at the University College Cork (UCC) research community on 14 June 2021. The presentation covers consent forms, anonymisation, and key considerations for conducting qualitative research.
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DRI Introductory Training: Consent Forms and Anonymisation
- 1. Consent Forms Dr Aileen O’Carroll, Policy Manager, Digital Repository of Ireland Twitter: @aaocarroll Email: aileen.ocarroll@mu.ie
- 2. Research on living people • Decision on confidentiality • Consent to deposit data in the archive • Consent on who will be able to access the data
- 3. Examples on questions on confidentiality • I agree to be identified in this research • I do not agree to be identified in this research and wish to remain anonymous
- 4. Limits to confidentiality It must be recognized that, in some circumstances, confidentiality of research data and records may be overridden by courts in the event of litigation or in the course of investigation by lawful authority. In such circumstances the University will take all reasonable steps within law to ensure that confidentiality is maintained to the greatest possible extent. (Maynooth Consent Forms Policy) DRI will take all reasonable and lawful steps to ensure that the permissions granted by the depositor will be enforced by the system. (DRI Restricted Data Policy)
- 5. Examples on questions on consent for archiving • I agree for my data, once anonymized, to be retained indefinitely in the IQDA archive or similar • I agree that these photos with captions will be archived with the Irish Qualitative Data Archive and the Digital Repository of Ireland, or similar. • I agree, to the interview being archived with a digital repository
- 6. Examples of questions on who can access the archive • I agree that my archived interviews will be made available to the general public. • I agree that access to my archived interviews will be restricted to those engaged in teaching and research.
- 7. Anonymisation Dr Aileen O’Carroll, Policy Manager, Digital Repository of Ireland Twitter: @aaocarroll Email: aileen.ocarroll@mu.ie
- 8. Anonymisation: Does this allow me to identify? Develop an anonymisation Protocol ● Remove major identifying data (real names, place and company names) ● Remove all identifying details (names, street-names, real names, occupational details) ● Replace with descriptions that reflect the significance of the original text within the context of the transcript ● Keep a tracking table to record all changes and to link real names with pseudonyms IQDA Anonymisation Guide https://www.maynoothuniversity.ie/sites/default/files/assets/document/IQDA%20
- 9. Original Anon What is this Why is this being anonymised Team Decision Aishling @@Niamh## Respondent’s name Potential to identify Clonakilty @@town in south west## Respondent’s place of residence Potential to identify O’GaravansFun eral Home @@local business## Respondence place of work Potential to Identify
- 10. Original Anon What is this Why is this being anonymised Team Decision Aisling @@Niamh## Respondent’s name Potential to identify Agree Clonakilty @@town in south west## Respondent’s place of residence Potential to identify Agree O’BriensFuner al Home @@local business## Respondents place of work Potential to Identify Disagree, keep as @@ Funeral Home##
- 11. Putting it all together an example from the archive Dr Aileen O’Carroll, Policy Manager, Digital Repository of Ireland Twitter: @aaocarroll Email: aileen.ocarroll@mu.ie
- 12. 25 qualitative interviews with organisers from: Abortion Rights Campaign (ARC) Alliance for Choice (AfC), Midwives for Choice (MfC), Migrants and Ethnic-minorities for Reproductive Justice (MERJ) Need Abortion Ireland (NIA), Parents for Choice (PfC) MIDWIVES for Choice STRIKE Interviews and reports archived at: arhttps://doi.org/10.7486/DRI.kh04tb834 Repeal the Eighth and Reproductive Rights: Organiser Interviews Aileen O’Carroll, David Landy, & Máire Ní Mhórdha
- 13. Information Sheet 1 CONFIDENTIALITY AND WITHDRAWING FROM THE STUDY You are free to withdraw from the study at any time until the final report is published. You will be guaranteed confidentiality unless you give us permission to identify you. It must be recognized that, in some circumstances, confidentiality of research data and records may be overridden by courts in the event of litigation or in the course of investigation by lawful authority. In such circumstances the University will take all reasonable steps within law to ensure that confidentiality is maintained to the greatest possible extent. You will be asked to complete a consent form where you can specify the conditions under which you wish to participate in the study. You will be asked if you wish to be
- 14. HOW YOUR DATA WILL BE USED If you agree on your consent form, your interview material will be deposited with the Irish Qualitative Data Archive (www.maynoothuniversity.ie/iqda) at Maynooth University (or similar archive). Research data deposited with the Irish Qualitative Data Archive are kept securely in Ireland’s national trusted digital repository, the Digital Repository of Ireland (repository.dri.ie). Before your interview is placed in the archive all names or other information that might identify you will be removed or altered, unless you have given us permission on the consent form to keep your name and other identifying information. In the consent form we will also ask you who will be able to access your archived interview. If you wish we will make it publically available. Alternatively we will restrict access to other academic researchers can then apply to download your interview from the Digital Repository of Ireland (repository.dri.ie). If you choose restricted access The Irish Qualitative Data Archive will take all possible steps to ensure that only researchers who are associated with approved institutes of higher Information Sheet 2
- 15. Consent Form blah blah blah
- 16. Anonmyisation Repeal the Eighth and Reproductive Rights Interview with @@Elizabeth## Interviewee: [Unclear ]. I am from @@a Northern and Western county##, it is a small town up in @@Bailebeag##, and my parents divorced when I was quite young and that was, well they tried to divorce when I was quite young but it was still illegal so I think that was sort of like an introduction to politics in a sense. It was the first time I understood that the law could stop you from doing something that you wanted. And then I went to secondary school and that was fine. I wasn't raised in a political household, I suppose they would be nice liberal people but not particularly political. We didn't really have political discussions I don't think aside from talking about the divorce referendum or maybe there was a bit of banter in the house around Mary Robinson's election. Granddad was like, oh no we couldn't have a woman. And Granny was like, we will have a woman. So that sort of thing, strong women in my life. And when I came to college it was @@the early 2000s## and so I was just graduating around the time of the crash or just leaving college around that time.
- 17. Access 25 interviews 18 Publicly available ( 6 anonymised) 7 Restricted to those engaged in research only (5 anonymised)
- 18. Resources IQDA Anonymisation Guide https://www.maynoothuniversity.ie/sites/default/files/assets/document/ IQDA%20Anonymisation%20Protocol%20V5_0.pdf. DRI Restricted Data Policy (Amended 2019) https://doi.org/10.7486/DRI.8623xk58w Example of Consent Form: https://doi.org/10.7486/DRI.n2979m73g Example of Information Sheet: https://repository.dri.ie/my_collections/n871cd41p
Hinweis der Redaktion
- Consent Issues (research data that contains information about living people) Briefly before you begin collecting any data about living people, it is important that your consent form asks for permission to deposit data in an archive. You also need to consider whether the deposited data will be anonymised or not, or whether you will leave that choice up to the interviewee. You will need to think about who will access the data once it has been deposited. Will access to it be restricted eg only available to those who wish to use in research and teaching? Or will it be available more publicly. This information should also be reflected in the information sheet.
- [Add quote from DRI restricted data] Difference between confidentiality and anonymisation confidentiality: you tell me something in confidence, I don’t share your identity with you anonmyisation: personal identifiers have been removed from the data set so you no longer can be identified If you do offer confidentiality, you need to be aware of the legal limitations to that offer, and include this in any information sheet or consent form. If you do promise to offer to anonymize the data, you need to ensure that this is done in a rigorous manner. You can find a guide to anonymizing data here
- Does identify who this person is? Goal is to ensure respondent confidentiality while maintaining sufficient detail to enable effective research. Question: Would you anonymise GAA? Question: Would you anonmyise Olympic Swimming Team? It may be necessary to anonymise these depending on context. The key question to consider is whether or not the organisation is unique enough for individuals to be identified through their association with it. If you do anonymise the name of an organisation, do so by referring to its broad category e.g. @@Church choir##, or @@local football club##, and include an alert in the Anonymisation Table. As with names and places, provide sufficient information in your description to reflect the significance of the organisation in the context of the whole transcript. Keep a table so you can review all your decisions holistically. Usually you an keep one type of information if you lose another type of information.
- Example of an anonymisation table/ grid
- Example of an anonymisation table/ grid
- Information Sheet (Informed consent) plain langage Purpose of the research: aim What is involved in participation: methodology / What will be the nature of the participations: one time, longer term, collaborative involvement Mechanism of withdrawal Benefits and risks Offer confidentiality / Data Anonymity How the data will be used (for what, who has access) / Data management, storage and rentention, Where will data be kept, for how long
- Information Sheet (Informed consent) How will the data be used Will it be archived Funding source - Is there a potential conflict of interest (eg related to the funding source) contact details complaint procedure Referral to support
- IMPORTANT WITHDRAWAL I understand that my participation is voluntary and that I am free to withdraw from the study at any time until the final study report has been submitted, without affecting my rights. I understand that I can withdraw my interview transcript and change this consent at any time until the final study report has been submitted and the data have been deposited in an archive Questions for the archivist reviewing the Information Sheet and Consent Forms * is there consent to archive * is there mention of destroying the data * what does it say about anonyminity * has there research obtained ethical review
- The goal of the anonymisation protocol was to ensure respondent confidentiality (where required) while maintaining sufficient detail to enable effective use of the transcripts by other researchers and activists. The first question asked of any detail was, ‘does identify who this person is?’ (particularly when combined with other information within the transcript). Where a piece of text was altered we replaced with descriptions that reflect the significance of the original text within the context of the transcript and used a format which made it evident to the reader that this was an anonymised segment. As is normal in most research processes we anonymised names, company names and professional or occupational details (including university degrees undertaken). Identifying numbers were generalised (for example age or dates, 1985 would become mid nineteen eighties). In terms of geographical information, we used the EU geographical standard NUTS 1 which divides the country into five areas: Border, Midland and Western, Southern and Eastern. We didn’t anonymise Dublin or the UK. Where migrants were interviewed removed their country name as migrant are a small population in Ireland and within the equally small networks we were discussing their nationality may have led to their identification.