By Andy Burman, PRIM&R Blog Squad
PRIM&R is pleased to bring you blog posts from the PRIM&R Blog Squad during the 2010 Advancing Ethical Research Conference. The PRIM&R Blog Squad will be blogging every day from the conference, so continue to check back for updates.
At home when people ask me what about my job title and I reply, “research program coordinator”, it is not uncommon for people’s eyes to glaze over. That’s when things get awkward, because the subsequent question becomes, “What does that mean?”
Despite my three years looking at consents with my institution’s IRB, I haven’t been able to develop “clear, concise language” explaining this side effects of my job. Is there language that I could use that most people would easily understand?
It is my job to support a committee of people whose focus is to balance the need to conduct research with the needs of protecting human research participants.
Oh, crud. That has a Flesch Kincaid Grade level score of 13.03. Not below an eighth grade reading level, still too complex. I better try again.
My job is to assist a group of people. These people balance the need to conduct research with the needs of protecting those enrolled in the research.
That’s better, a score of 5.41.
The things we, humans, choose to care about.
An overarching theme of the AER Conference this year has been informed consent.
“Most informed consent reading levels are too high.”
“They are too long and legal.”
“God save the trees!!”
It seems to me that we are all looking for a magic bullet when it comes to the consent of research subjects. We aren’t happy with the way things are, therefore there must be a better, all-encompassing solution that will work for everyone in all circumstances. But simply to say that informed consent forms are the problem, and to say that verbal consent would more fully inform subjects, is to ignore a huge source of the problem:
We are human and we don’t all think, act, or behave in the same way. We are different by nature. It is these differences that make the process of informed consent difficult. After all, being “informed” to one person, may not equate to “informed” to the next. Being informed is subjective.
Can we do better consenting? I believe we can. However, as long subjectivity and humans are involved, then we can never expect to reach an all-inclusive solution or perfection of the informed consent process. It just isn’t a reasonable expectation.