I know everyone has been eagerly awaiting the next blog post; this busy spring is melting into a busy summer, as I'm sure many of you can relate to. There has been a lot going on here at Sanford Research with people traveling to conferences, writing grants, and most excitingly: preparing for our summer interns that will be arriving in a few short weeks! I hope to have some of them come up with ideas and try their hand at blogging ΓÇô so stay tuned for that.
For this post, I want to talk about how important it is for tribes and people working with tribes to be involved in national conversations. A few weeks ago, I spent five days in Boston attending conferences and workshops put on by the Public Responsibility in Medicine and Research (PRIM&R) and the Office for Human Research Protections (OHRP). In 2009, I spent the summer in Boston as part of the Four Directions Summer Research Program, so it was nice to be back and pretend as if I knew how to use the subway. Anyway, both PRIM&R and OHRP offer spaces for people involved in research to seek guidance on research ethics and regulations, with the OHRP providing support and guidance for all of the federal agencies that conduct research. I think these topic areas can be heavy and may be boring for some people, so I really was not sure what to expect by attending the conference and two days of workshops.
First, I had fun and I gained some new perspectives when it comes to conducting research with vulnerable populations, the Common Rule, and the informed consent process. The hosts of the events were so welcoming and accommodating and really, who would not enjoy hanging out in Boston for a few days? While I did have fun and had a great time, this was really an uncomfortable experience for me. I felt out of place and maybe a little over-my-head in some of these conversations.
I've been reflecting back on this to try to figure out why I felt this way when everyone there was kind and welcoming and I think it was simply because I was the only one there who worked with tribal communities. You might be wondering why this would make a difference or why it would affect my experience that much, and it really comes down to tribal sovereignty and the different lens that tribal research review boards look at research ethics and research protections. I'm used to almost entirely thinking of research from this vantage point, so it was disorienting to be in a space talking about research ethics and regulations that didn't focus on tribal efforts to manage research.
The speakers that PRIM&R and OHRP brought in were obviously knowledgeable about research ethics and regulations but really only looked at research from a Western perspective. All of the conversations I overheard and was involved in left out the unique perspectives of tribal communities in reviewing research. This made me doubt myself at times but it also illustrated just how vital it is for those of us who are tribal members working in research or those of us who are researchers working with tribal communities to be a part of these bigger conversations. We must keep making ourselves visible and keep talking about research ethics from the perspective of tribal communities, even if it is a little uncomfortable.