IRBs, confidentiality, and sharing research data

[Erica Fontana]

Hello all,

I have a few questions about fieldwork, confidentiality, and IRBs that are hopefully not completely obvious.  I'm hoping some of you who have been through the fieldwork process already are able to offer some guidance.

I'm starting my dissertation research in Poland this year, where I will be interviewing museum and cultural center employees/volunteers and other people involved with this kind of "memory work" about the process of creating public presentations and framings of Poland and Polish culture.  I'm currently working on some revisions for my university's IRB before I can begin the actual research.  The project has been provisionally approved, but they have requested a few minor changes and supplemental documents - among other things, a more specific description of the disclosure of research data.  This poses a bit of an ethical dilemma for me, as I would like to share my research data, at least in some form, with the participants and the institutions they are involved with so that they can benefit from my study as well (and possibly with other researchers working on similar topics as well), but certainly don't want to do anything that would compromise participants' confidentiality.  What is the best way to handle this, for purposes of writing the IRB application and beyond?  Have any of you dealt with this kind of situation?  To what extent do I need to "de-identify," e.g., remove names and other identifying information from, research data in order to share it with other researchers/interested people, and how do I go about doing this to ensure participants remain confidential? What are your thoughts on making research data public/collaborative?

Thanks in advance!

- Erica

[Patty A. Gray]

Erica, I think part of what you need to grapple with is how you will negotiate consent with the participants in your research over the long term. You will need some plan for how you will inform them in a meaningful way about the research and about what you would like to do with the material you collect from them, and you then need some plan for how you will get their consent not only to participate in the research, but for the use of material that includes them. Some IRBs are satisfied if you hand them and information sheet and consent form; the savvier ones will want to see that you have thought through these issues to the end and have a clear plan that involves more than forms (and sometimes the most ethical approach is not to force people to sign forms at all).

In negotiating consent with participants, I like to let them call the shots about anonymity, i.e. I sketch out various scenarios and find the level at which they are comfortable (completely anonymized data where you remove not just their names, but also any contextual information that could lead to them being identified? Just changing their names? No anonymity at all?). It is also important to be clear about the distinction between anonymity and confidentiality. But for me, the bottom line is that I do not try to put each participant in the same box - the terms of participation are unique for each person.

One book I highly recommend, which addresses some of the issues you are dealing with and is written in a beautifully sympathetic way, is Luke Eric Lassiter's book The Chicago Guide to Collaborative Ethnography.

[Erica Fontana]

Hi Patty,
Thanks for this advice!  My university's IRB definitely seems to be one of the ones that prefers a detailed research plan (which in some ways is good, as it helps me think through some of these issues not only for purposes of getting the research done, but their implications for what will be done with the research data in the future).  I added some more information into my form about discussing specific confidentiality possibilities with the research participants (e.g., complete confidentiality vs. only changing names vs. use of real information) - hopefully this should work.  I definitely plan to order the Lassiter book that you mentioned - I looked at a preview of it and it seems like it will be pretty useful.
 - Erica