5. The data you collect are identifiable and could harm your
research subjects if inadvertently disclosed.
What to do:
Design a procedure to protect the data. Ask yourself the questions listed below to guide you in developing confidentiality procedures for identifiable potentially harmful information. Samples are provided at different comprehension levels to give you a sense of how to talk with and write for different subject populations.
Note: It is not sufficient just to tell participants that identifying information they provide will be kept in confidence. You have to explain how it will be done.
1. Do I need to collect email addresses, physical addresses, or other identifiable information so that I can keep a record of people who have participated in my study? If so, can I design a procedure that will allow me to know who participated in my study, without connecting identifiers to their responses?
Alternatively, do I need to keep the data temporarily identifiable?
I will keep your email address so that I can send you a reminder notice if you haven't completed the survey. The only information connected to your email address will be whether or not you completed the survey, not your answers to the survey.
I will keep your contact information with your interview responses in case I have additional questions before I leave the country. I will destroy that contact information as soon as an interview is complete. My field notes will be in a password-protected file on my laptop computer.
2. Do I need to link sensitive data, for example from pre- and post- intervention questionnaires? If so what procedures could I use to make sure that no one other than the research staff can link individuals with their responses? Should I use a key to link individuals' names to an identifying number that I put on the questionnaires and then lock the key in a safe place (physically or electronically). Or should I ask participants to create their own unique identifiers to put on their questionnaires, so that I will not be able to link names with identifiers?
You will be assigned an ID number and we will temporarily link this ID number with your name so that when you come back for the second session, we can mark the creativity measure with the same number. After you have finished or stopped participating, we will destroy the key that links your name to the data you provide. We will simply have data with ID numbers and there will be no way to know who provided which sets of data. Although your name will be collected on this consent form, it will be kept in a separate place from the data.
We are going to give everyone in the study a number. I will have a sheet of paper that links your name to your special number. I will put your number, but not your name, on the notes that I take as we talk and I will put the same number on the pictures you draw for me. After the study I will destroy the paper that links your name and your number. That way I will just have pictures and words with no names on them. Even though I will know who you are, I won't use your names when I write my report.
3. If my participants could be indirectly identified with relative ease because I plan to conduct research in a small community or with a small number of subjects who are well-known in some way, will it be necessary to disguise the identity of my subjects by providing misleading identifiers? Will I need to disguise the identity of the community in which I conduct the research?
I will use pseudonyms and misleading information when preparing reports or articles about the research.
I will use false names when writing reports about this study. I will also make up some information about you so no one will be able to guess who you really are.
4. Am I collecting identifiable information that might be subject to subpoena by a court of law, such as information about illegal activities or sexual orientation? (If so, you will need to apply for a
Certificate of Confidentiality so you will not be compelled to disclose your data.)
5. Do I plan to audio-record interviews? If so, will I erase the tapes after I have made a transcript or will I archive the tapes for use by others?
With your permission, I would like to tape this interview so that I can make an accurate transcript. The tape will be destroyed as soon as the transcript is completed.
If it is OK with you, I would like to tape this interview so that I can write down what you said without mistakes. Once I have made my notes, I will erase the tapes.
With your permission, I would like to tape this interview because I think that your story will be valuable for other researchers interested in this topic.