So, not doing so well with vlogging and bibbing the off-weeks, but here is week 9, and our theme is Ethics of Researching Rare, Stigmatized, and Hidden Populations. You know, like when this guy told me how impressed he was with some anthropologist who insinuated themselves into an obscure group, learned the things they only taught to a trusted few, and then published their findings to, oh, the entire world? *headdesk* Yes, this conversation just happened a week or two ago, and the person I was speaking with was shocked that I would consider this to be completely unethical. I think that makes a perfect backdrop for this discussion.
Blumenthal D.S., Jones, C., and DiClemente R.J. (2003). Chapter 3: Public health ethics and community-based research: Lessons from the Tuskegee syphilis study. In D.S. Blumenthal and R.J. DiClemente (Eds.), Community-based health research: Issues and methods. New York: Springer Publishing Company.
It’s hard to know what to say here. The idea that anyone ever could have thought it was appropriate to tell people they were receiving treatment when, in fact, they were research subjects being undertreated for a disease they didn’t know they had, and an infectious one, at that, is just mind-boggling. But at the time, it seemed entirely reasonable to everyone involved. It does beg the question we were asked to consider: what sorts of research are going on now that, in another decade or so, will be considered reprehensible, but seem entirely reasonable now?
Harmon, A. (2010). Indian Tribe wins fight to limit research of its DNA. New York Times. Retrieved from http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all[4/23/2010&_r=0
Can I just say that stories like this are exactly why I am highly suspicious of these new kits to send in a swab of your DNA and get a whole map of who you are related to? Sure, maybe that’s all it does. But if someone, somewhere, now has your entire genome, and it is stored (either physically or as an electronic representation), someone else can turn around and use it for something else. The “easy” solution from the perspective of the researcher is to explain the nature of the current study and then explain that it is possible that the information collected could be used as a basis for future studies, or that your DNA could be used in other research in the future, and let the participant decide if this is okay or if they want any sample of their DNA destroyed after the current study.
Krugman S. (1986). The Willowbrook hepatatis studies revisted: Ethical aspects. Reviews of Infectious Diseases 8(1), 157-162.
This study is almost as infamous as the Tuskeegee syphilis study. Reading the background, as a nurse, I can’t help wondering how nobody took Old Flo’s recommendations from way back when and addressed the sanitation and overcrowding that were making measles and hepatitis such a problem in the first place. Of course, the answer to why is the usual: money. Making the leap to, “Let’s deliberately infect people so we can observe the ‘natural history’ of the disease,” however is another thing entirely. Their rationale was that, well, everyone is contracting it anyway, so at least we’ll know exactly when and how. At the time, they also felt that giving young children an expected mild case was akin to vaccinating them. (So why not just develop a vaccine?) That, actually, makes some sense, considering that people would deliberately expose their children to chickenpox as young as possible so that a) they would get a milder case and b) become immune. As the author says, “The fact that the children were mentally retarded was relevant only to the extent that society placed them in an institution where hepatitis was prevalent” (Krugman, 1986, p. 160). And, unlike Tuskegee, some benefit was actually gained. They learned to distinguish between Hep A & B and even developed the Hep B vaccine prototype as a result. Still, the very fact that the approach taken didn’t even consider the “societal factors” to be within the purview of the researchers still has me reeling.
Smith G., Bartlett A., and King M. (2004). Treatments of homosexuality in Britain since the 1950s—An oral history: The experience of patients. British Medical Journal, 328, 427–9. doi:10.1136/bmj.37984.442419.EE
Not the intended take-away here, but I was impressed by the complete absence of any possibility that some of the subjects interviewed might be somewhere on the asexual or aromantic spectrum. For example, one man who had received some form of conversion therapy and went on to marry a woman was actually content to have a sexless marriage and describes how they were very fond of each other, but entirely platonically. He did state that he still had homosexual feelings. Might this be someone who was homosexual and aromantic? Might his wife be ace/aro? There is no way to know, of course, but it would be interesting to see those aspects explored.
Zion D., Gillam L., and Loff B. (2000). The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations. Nature Medicine 6(6), 615-7.
One of the biggest take-aways from this article is simply that our ethical frameworks have not kept pace with technological advances and increased globalization. The guidelines recommended in this specific article suggest that community-based participatory research (CBPR) is one way to ensure that exploitation is not happening, by requiring that a) the research addresses an actual need of that population and not merely the needs or curiosity of the researcher, b) medical research should actually be impacted by differences inherent in the marginalized group (Tuskegee, anyone?), c) participants are not participating solely out of desperation without actually understanding the nature of the research (e.g. they may be in a control group and receive a placebo), and d) ongoing and followup analyses of negative impacts should be conducted to ensure that benefits outweigh said negatives.