The ethics of openness: How informed is “informed consent”?
Editor’s note: In this final post for February’s ‘Openness Edition‘, Rachelle Annechino takes us on a journey with her to the homes of her research participants and asks some really important questions about the wild “foreign languages” (legalese/medical-ese) that supposedly produce “informed consent” and the genesis of our understanding and practice of informed consent, and challenges us to think about how we might redesign informed consent in our own projects.
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One open window (Chris Downer) / CC BY-SA 2.0
Today I’m interviewing a couple of people who participate in a free program offered through a local hospital. The program mainly serves older adults who are dealing with a range of health issues, like diabetes, cancer, and arthritis. Many of the participants belong to groups that are affected by health disparities (or “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations” as defined by the US CDC [1]).
After hanging out at the hospital for a bit to check out the program, I go to the home of a woman in her 60s who couldn’t come to the hospital today. We talk about the study, its risks and benefits. It’s a small exploratory study, some semi-structured interviews; the hospital IRB gave it an expedited review.
The benefits, I explain, are that this might help improve the program or keep the program going. There aren’t really any direct benefits to you though. We wish we had something to give you to thank you for participating. Basically what we’ll do is just sit here and talk. A risk is that some of the questions could be uncomfortable, but we can skip anything you want. If it’s okay with you, I will record the interview. We won’t put your name on the recording or use your name in reports on the interviews.
We have this standard consent form that the hospital uses, I say. It’s kind of long. We can go over what’s in it together, and please feel free to take as much time as you want to look it over…
Et cetera. As I’m saying this stuff, I’m cautiously drawing out the consent form.
Which is eight pages long.
And crazy.
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