Providing personal (raw) data to study participants

I would like to take a moment to share with you something we are working on in the Center and to get your input. Now and then, we get research participants who ask about access to their own data. Researchers often provide a pretty picture (brain scan) or a more-or-less random printout of a time-series, which seems to be OK for most participants. Here at the Center, we feel that if you participate in a research study, you should get a copy of your own raw data if you are interested. We are working towards rolling out a policy across all our studies with healthy participants, in close collaboration with our IRB. Here are some of the thoughts and concerns that have come up along the way:

• How can we make sure participants do not misunderstand the raw data as "clinical results"? The obvious answer is to clearly state that any raw data from a single participant in our studies do not reveal or contain clinical information. Yet, this is a tricky issue since the potential for misunderstandings is quite substantial...
• How do we actually share the data? If we recorded your EEG and you are interested in getting the complete raw data, we might might need to buy high-capacity memory sticks...
• Does the IRB allow providing the raw data to the participant? In our case, we have had a good conversation with them about this and have according language in our consent forms.

Overall, we are convinced we are doing the right thing. After all, it is a special privilege to receive permission to perform biological measurements on someone's body. Let's never forget that! What are your thoughts on this? Are there other aspects of how human research studies are performed that could be changed to enhance autonomy and respect of/for the participants? We are eager to hear from you!

Take care,

Flavio