I am Martha (Marty) Henry, founder and President of M.A. Henry Consulting, LLC in St. Louis. Today I will be sharing a story and some hot tips about data confidentiality and data ownership.
My firm was evaluating a federally funded project at a university under IRB oversight with approved consents for participants. The consents stated that only evaluators (we were named in the consent as evaluators) would have access to the key that linked participant codes to participant names. Two-and-a-half years into the five-year project, the program staff required that evaluators turn over all data with identifiers for internal uses.
Discussions with the university IRB confirmed our position to provide coded data to the project without identifiers as conforming to the consents sent out on university letterhead and signed by the PI. The university program staff, none of whom had taken the CITI training in human subjects, referred to the university contract language that said that all data were the property of the university. Their interpretation was that the data should be turned over with participant names.
We maintained our position and were fired as evaluators. The university then demanded the data as we were no longer the evaluators for the project. After retaining legal council and discussions with IRB experts and federal oversight staff, we reiterated that we would turn over coded data at any point but not identifiable data. Thirteen months later the university agreed to receive the coded data.
Hot Tip: Before signing any contract that references data ownership, obtain interpretation from your legal counsel regarding congruity of the language as stated in the contract and in the participant consents. If there is any possibility for dual interpretation, add an amendment to the contract clarifying release of confidential, identifiable data and which staff may have access to it.
Hot Tip: Before agreeing to evaluate any project, assure that all project staff have passed CITI. CITI is a series of training and education modules about the history, ethics, and practices necessary for protecting human participants, which generally include anyone participating in a study. The CITI training modules and tests are available at https://www.citiprogram.org/Default.asp?
Hot Tip: If anything seems amiss in your beginning discussions with clients, trust your gut!
This contribution is from the aea365 Daily Tips blog, by and for evaluators, from the American Evaluation Association. Please consider contributing – send a note of interest to aea365@eval.org.
Thank you for this information. I am actually starting a new position as an Analyst which involves program evaluation and one of our issues seems to be around data ownership. Thank you so much for your insights and resources!
Marty, thank you for describing so candidly what must have been an uncomfortable experience. Your story is full of useful lessons for the rest of us! I’d like to follow up on your tips to educate myself and my clients on protecting human participants of evaluations and social science studies. My questions echo those of Alexey and Susan: As an independent evaluator, is it possible to get access to CITI through AEA or other means? Are there other free resources available? I’m based overseas and would have to adapt materials to the local context. Thank you again!
Martha, I went to the CITI website and noticed that this training is not free but is available through organizational affiliation. Do you know if AEA has purchased this training for its members?
Marty, thank you for sharing your experience. This topic is extremely important. Especially for us in Russia since we still don’t have a system for protection of human subjects. After visiting the CITI website I have got a question for you: how can international evaluators (companies) join the party?
Alexey
While I don’t wish this kind of situation on anyone, as an evaluation instructor, I very much appreciate your willingness to share this details of this unfortunate situation. My Program Evaluation graduate students frequently ask me for “real life” examples of ethical issues that arise in evaluation, and this one comes with an excellent set of tips for future evaluators to to help them avoid this scenario. I am also pleased to know that you adhered to your guiding principles and protected the identities of your evaluation respondents, especially at great cost to you and your firm. Thanks again for sharing this.
Hi Marty,
Nice to see another St. Louis native!
And you’re right–IRB and data ownership issues can get sticky rather quickly. It’s great to see that you and your firm stood your ground! Thanks for sharing your insight!
Marcus