I’ve been dividing my time between IRB CITI Training and gathering the most recent data about Post-Treatment Lyme Disease Syndrome (PTLDS). Although I haven’t quite figured out what aspect of my project might involve IRB, this training alerted me to some interesting concerns about the “justice” piece.
1. Social Class: The Belmont Report explains that justice is a key issue with selecting study participants, and one of the CITI training documents states, “Undue influences are real or perceived pressures to participate and can arise from financial incentives, inequitable power relationships, and implied benefits from participating.” This piqued my interest because recent research seems to suggest that upper-middle class and wealthy people may be at a higher risk for Lyme because they live in areas that are being build and rebuilt, which increases the rodent population. (Lyme Disease is now considered to be a biodiversity issue because ticks use mice and other small mammals as hosts in addition to deer, which is one reason why it seems to have spread so widely in the last 30 years). As an upper-middle class ill person, I certainly fostered some inequitable power relationships (i.e. being family friends with doctors) that allowed me to get earlier appointments with specialists, see as many doctors as I wanted, and consider participating in studies that required me to drive an hour each way on a regular basis. I’m not sure what direction I’ll take with this, but I don’t feel like I can ethically avoid considering how class status factors into Lyme diagnosis, treatment, and recovery.
2. English Language Skills: I’ve been playing with this power point by Jonathan Alcott, the lead researcher at the new Lyme Disease research center at Hopkins (http://phpa.dhmh.maryland.gov/OIDEOR/CZVBD/Shared%20Documents/ZDU_PTLS_Aucott.pdf ), and was concerned/interested about his discussion of “subjective” and “objective” symptoms. “Subjective” symptoms include pain and fatigue–which are very difficult for native English speakers to explain and perhaps nearly impossible for English language learners to describe. CITI Training reminds us that “[s]ubjects should not be denied access to potential benefits of participating in the research because of considerations such as whether they speak English.” I can appreciate why this is important to consider, but I also wonder if the population who does participate in these studies somewhat self-selects–I know that I personally have self-selected to participate in different studies, though I haven’t felt constrained by my English language reading or speaking abilities. This makes me wonder if Lyme researchers might not be treating/studying a huge portion of the population because it is perhaps impossible to describe pain in a language one is still learning.