Respecting Research Participants

A few days ago, I wrote about some interesting new research (“Were You Born to Be Sad?”) on the genetic basis of depression. A series of fun quizzes at the research group’s website made the research project sound pretty fun from a participant’s perspective, and I signed up for the study. Of course, I wasn’t just looking for fun — I have a professional interest in the topic, and the aims of the research seemed to me well worth supporting — but nonetheless, my first impression based upon the website was that it all looked pretty well designed for the research participants.

When I received the questionnaire and consent forms in the post, however, I was reminded once again of the power asymmetry which many people believe exists within the psychiatric profession, between those who are ‘experts’ and those who are mere ‘patients’ — or, in this case, those who are mere research participants.

Data collected during a psychiatric or other medical research study will typically be kept entirely confidential; any study participant has the right to expect that of any research team. But in this particular case, it turns out that a participant’s data will be kept from the participant as well: no feedback of any kind will be provided on questionnaire data, and a participant’s genetic sample itself is required to be legally ‘gifted’ to the researchers, meaning it becomes the legal property of the researchers and the University. Moreover, genetic results in the study can be linked directly back to specific named individuals. Participants are even required to agree that their DNA sample may be used for future (as yet unplanned) research into mental health!

Now, of course I understand that sound scientific reasons often exist for refraining from providing feedback to research participants; ethical considerations may occasionally make it appropriate to withold information from research participants. In such cases, however, these ethical considerations would normally be shared with participants. In the case of questionnaire results being used to profile depression (including a symptom inventory), it seems to me rather unusual to state categorically that no feedback of any kind will be provided to participants; indeed, it seems to me more than unusual to deny feedback even in the hypothetical case that data were to indicate someone might actually be severely depressed.

So, the ‘fun’ of taking a few internet-based quizzes (which, ironically enough, do offer participants some feedback!) goes out the door, and in its place appears an entirely one-way power structure and an entirely one-way flow of information and of benefit. Research participants are denied any and all access to their own data, information which becomes 100% the property of individual researchers and the University.

I found myself fairly annoyed when I read through the research materials, and in the end I declined even to participate. Reflecting on my own reaction to the materials, I recognize that the fundamental issue for me is one of simple respect. Reading through the materials, I could find no indication that the authors had given a moment’s consideration to how a research participant from the general public might actually receive what they were being told by the documents; rather, I only got the impression that it was not worth the researchers’ time to explain to participants why they would be denied any access to their own data. I recognize intellectually that it is almost certainly merely a matter of cost: it takes time and money to provide data back to participants, particularly in the case of genetic information, which would need to be transformed into a form appropriate for a non-geneticist to understand. (It is far cheaper simply to offer participants the chance to win £100. No, really: the sole concession to research participants is that they will be entered into a prize draw.) But that intellectual understanding cannot, unfortunately, erase my sense that what I am reading is simply an example of a psychiatrist talking down to research participants, without the faintest inkling about how a research participant might experience that condescension.

Here are my personal suggestions for demonstrating simple personal respect for research participants:

• Offer participants feedback on their own participation.
  • If you cannot do that, explain clearly the scientific, economic, or other rationale for denying that feedback.
• Try to step out of your own professional shoes for a moment and empathize with the experience of members of the public who might read your research prospectus/other materials.
  • If you cannot do that, ask some members of the public for direct feedback on your research prospectus/other materials, and act on it.
• If you are collecting data which could indicate a participant may be at risk of significant mental health problems, provide feedback to that participant appropriately and professionally — regardless of whether it may increase your costs for completing the study.

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