...And Therefore Revisable

Christine Halse and Anne Honey in Unraveling Ethics: Illuminating the Moral Dilemmas of Research Ethics state "In penning this essay, our aim is to make visible, and therefore revisable, the moral dilemmas embedded in research ethics policy and it's implementation by ethics committees..." (Halse and Honey 2142). Using this framework, the authors discuss the ethical hang-ups they experience at each step of the research process, from getting their work approved by ethics panels, to the consenting of the subjects, and offer critiques for the system at large and themselves as individuals.

Halse and Honey explain that, in order to approach the ethics panel at all, they had to define the group of girls they would be studying, even though they did not feel that there was an easy or useful way to do so. Should they study girls who have been diagnosed as anorexic, even though they don't agree that they have a condition, or should they study a group of girls that self-disclose as anorexic? They write, "To brand a girl anorexic, without consent was to deny her selfhood - one of the very issues the study aimed to address...Further, as researchers familiar with clinical settings, we knew that a medical diagnosis of anorexia nervosa could not create a coherent category of person, " (2146).
While deliberating how to negotiate the title of the target population, the authors were being pressured by funders and colleges to simply pick a title. This, for me, was a very, very important point. We started out this semester talking about quantitative versus qualitative research, and one of the arguments against qualitative had to do with how much time and money was needed to complete it. Resources for research are not always abundant, and the backlash these researchers received because they were not producing results quickly most likely framed what kind of research they produced. They are not the only two who are restricted by time lines and money troubles. This makes me wonder how much ethics is dependent on the climate in which the research is conducted? Does a lack of resources necessitate unethical work? I'm not talking here about work that is reviewed by they ethics panel and given the go ahead. Rather, I mean, do the researchers even have the time and energy to question those panels for being entrenched in the sciences?

I also found the discussion about informed consent compelling and problematic. By the time we read this section, we've just come to the conclusion that ethics panels are not necessarily ethical, and so the reader is all of the sudden struck with the question of whether or not informed consent is a legitimate or useful term, especially when it is restricted by age. What makes a fourteen year old incapable of making her own decisions as opposed to a fifteen or sixteen year old? When we are working with a population that is self-starving, and if they have been labeled medically unsound by professionals, then we have to unpack all of the scientific underpinnings and accusations  about the young women. If we see the girls as unable to take care of themselves even physically, how can we assume they know what's best for themselves, and therefore sign an informed consent form? I do NOT mean to suggest that the hard-wiring of the girls in question is somehow inherently flawed and that they are therefore unable to speak for themselves. In fact, I am very very grateful that the authors qualify the term 'normal' when they discuss eating habits, and look at a feminist theory that is critical of the society in which these girls live. Still, the girls who do not self-identify might have different reasons for participating in the research... and all of the girls will have different reasons for participating, whether it be to get the hell out of the facilities they are in, or to piss of their parents, or to have someone listen to them and treat them as human beings. Probably because the institution the research took place in agreed to allow the authors in, we do not see a critical look at what happens to girls that are labeled anorexic within those walls. There has been a great deal of scholarship concerning mental health institutions, and I did not see any of this reflected in the ethical debate.

"Ethics committees grew out of a positivist tradition of biomedical research that evolved in tandem with the theoretical-juridical model of ethics. Positivist research takes for granted the existence  of a putative knowable reality, and hat objective, universal truths can be revealed through empirical scientific data collection and explicit, transparent, experimental research operations and procedures .... yet the biomedical model also casts research ethics in a shroud of scientific neutrality..." (2153). The ethics panels are socially situated, as are the researchers, the doctors diagnosing and the reader. Every player here also wants to keep their job. Qualitative research was once seen as experimental, and it was also a thorn in the side of those who did not take it seriously. We should question ethics panels, but does that mean we should dissolve them entirely? Probably not. As women studies teaches us, we have to delve deeper into issues and save the good as well as critique the bad. Questions like these are for figuring out, not giving cause to the idea of slippery slope, where if we can not get exactly what we want to know, we dismiss the issue entirely. The authors want to open up their work for revisions and for others to build off of.. Even if a reader disagrees with the steps they took, it is useful to point out that they are open and willing to be used by the reader.