So, you may be wondering about the strange legalese-style form that I recently posted. Well, as an "ethical research" at an academic research institution, there are quite a few (bureaucratic) steps that I need to take in order to conduct research with "human subjects." In the wonderful world of academia, any research involving "human subjects" must be overseen by the Institutional Reivew Board (IRB) of the academic organization at which you work/study. One of the requirements of the IRB (among many!) is that all participants in a research project give informed consent for their participation in any study. Hence, the form.
One of the idiosyncratic details that may bring more light to the structure of my official informed consent form is that the IRB that I am working with is housed in the medical school of my university. As you can imagine, internet research is quite different that medical research (consider the differences between a human virus and a computer virus). Therefore, there are some aspects of the standard forms required by the IRB that may not be quite so relevant to my research. I am required, however, to follow my institution's IRB procedures. Failure to comply could result in many negative consequences, including the reality that my M.A. thesis could be rejected and I could be denied graduation. Yikes! So I'm being compliant. Because I want to graduate. That and I would never want to exploit anyone in the process of doing feminist research; it would be painfully hypocritical.
Following these requirements does not mean, however, that I cannot comment on elements of the IRB procedure that I find problematic. For example, the standard training program, the CITI program, utilized by my university does not provide much concrete guidance when it comes to internet research. Or, the Human Subjects Research Synopsis, the form for applying for IRB approval, has limited descriptors for describing the population with which one works ("healthy persons only," "both healthy persons and patients," "only asymptomatic patients with chronic conditions," "only asymptomatic patients"). The state of the health of self-identified feminist bloggers does not seem like a confound to my research. In fact, given the degree of anonymity available on the iternet, I really cannot verify the status of anyone's health (and it's really none of my business, as it is not related to my research topic). And who defines "health" anyway? What is a "healthy person"? Sounds a little normative to me...
For me, what was the most troubling experience that I had with the IRB was the advice that I received when I was initiating my approval process. When asking what level of review I should apply for (exempt, expedited, full protocol), I was told that I should apply for expedited status because of the topic of my research: feminism. It was reported to me that feminism can be seen as a "touchy subject" and that in the study of this "touchy subject" "human subjects" could be exposed to more than a minimal risk (minimal risk is defined as the level of stress a person would confront in normal daily activities). Now, I would just like to clarify that the person who relayed this information to me should not be blamed for IRB policy; this person was genuineley trying to give me the best advice possible and to make my IRB process as painless as possible. This person, however, did represent an IRB viewpoint, however, that feminism is...well, inherently dangerous. Or at least more stressful than...the oppression and the difficulties one faces in everyday life?
Now, I do not mean to make light of the protection of participants in research projects. As the CITI training clearly pointed out, there have been some incredibly unethical experiments conducted in the past (ie, Nazi experimentation, the Tuskegee syphillis "study"). I think here I am just advocating for more flexible/accommodating/applicable research oversight and the demystification of the IRB process. So, should you decide to participate in my research, I welcome you to critique the IRB-structure in which I am working. Do amend the informed consent form!
Oh, and I don't think feminism is dangerous (in the way it was implied).
My "real" informed consent form
Principal Contact: A Blog Without a Bicycle / ablogwithoutabicycle(at)gmail(dot)com
You're invited to be a part of my M.A. thesis project, which focuses on blogging and the creation of feminist networks online.
First, I want you to know that:
• You don't have to do it!
• It would be really cool if you wanted to participate and you could participate for as long (or as short) as you want.
• You may receive no direct benefit from taking part in this study. At least not a monetary benefit...But other good things could come out of your participation! Like lots of good karma for helping a M.A. student to graduate.
Now let's chat about what this study is really about...I wouldn't want you to start something something without knowing exactly it is that you're getting yourself into.
2) WHY IS THIS STUDY BEING DONE?
I am a M.A. candidate in women's studies and to graduate I must write a thesis. I have selected blogging and online feminist networks as the topic of my thesis. Although M.A. theses can have limited real-world application, I am hoping that - at least through this blog - my thesis will do more than contribute to enlarging my university's no-one-goes-there section of the library.
3) WHAT IS INVOLVED IN THE STUDY?
Here's the deal. You can participate by:
4) WHAT ARE THE RISKS OF THE STUDY?
No foreseeable risks are anticipated for participants in this study. I mean, you might spend some time reading a blog instead of balancing your checkbook or ultimately contribute to the overthrow of the patriarchy, but...as far as I know, my blog cannot hurt you.
5) ARE THERE BENEFITS TO TAKING PART IN THE STUDY?
To quote my thesis advisor, the benefits are, "Solidarity, sister!" Maybe you'll spend some time thinking about your views of feminism or the blogosphere in more detail (wait - is thinking dangerous? should I amend the risk section?). Maybe you'll connect with some other blogging feminists. Maybe you'll have something entertaining to read sometimes. I can't make any promises, though. But I'm hopeful!
6) WHAT ARE MY OTHER OPTIONS?
Sorry to state the obvious here, but you do not have to participate. You can even just ignore me!
7) WHAT IF I CHANGE MY MIND?
Well, I will be pretty proud of you for being open-minded. I hope you change your mind about things often! If you do not want to participate, just stop. You don't even have to reply to my emails or ever visit my blog again. It won't hurt my feelings; I won't cry myself to sleep.
8) WILL I RECEIVE PAYMENT FOR BEING IN THIS STUDY?
Hahahahahahaha...I don't even get paid for doing this study. In fact, I'm paying a university for the privilege of conducting this study.
9) WHAT ARE THE COSTS FOR PART IN THIS STUDY?
You are more than welcome to contribute donations to the support-my-thesis fund, but it's not required. In fact, participation is F-R-E-E. Isn't free stuff grand?
10) OTHER INFORMATION YOU NEED TO KNOW
Confidentiality. I am not about outing bloggers, but I am about giving people credit for their ideas. So, I will refer to you in my thesis/subsequent publications (oh, delusions of grandeur and academic articles!) as you prefer to be named. I will always respect your intellectual property by attributing your ideas to you.
Taking you off the study. Just say no. Consent is sexy! Oh...wrong context.
Consent Document. Please keep a copy of this document in case you want to read it again. Maybe it will make a good piece of scrap paper for your grocery list. Or you could just bookmark the link, if you really think you want to re-read this crazy rant.
Remember, if you comment on my blog, you've given your "informed consent" to be a part of my M.A. thesis project - and, frankly, I'm flattered. THANKS! : )
Please read the Informed Consent Form in full before posting to this blog.