Smorgasbord Thursday: Some fun, some food for thought, some learning

by Susan Trinidad, MA, Research Scientist in the Department of Bioethics & Humanities at the Center for Genomics & Healthcare Equality at the University of Washington

Before I get to the meat of this post, I want to dispel any sense you may have that we were dour and serious all last week in San Diego – despite the grievous lack of sunshine. Each morning, we were favored with the musical stylings of the inimitable duo of Michele Russell-Einhorn, senior director of the Office for Human Research Studies at the Dana-Farber Cancer Institute, and Ivor Pritchard, senior advisor to the director at the Office for Human Research Protections (OHRP). On the final morning of the conference, they treated us to a highly original and entertaining ditty set to the tune of the Beach Boys’ hit “Surfin’ USA.” Their version? “Shoppin’ IRBs.” Very catchy!

I also want to say that the Pillars of PRIM&R Lecture delivered by Elyn Saks, author of the astounding memoir, The Center Cannot Hold: My Journey Through Madness, was brave, powerful, and inspiring. Professor Saks is Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at USC. She is also a person with schizophrenia. Read her book!

In terms of didactics, the highlight for me on Thursday was Tribal Participatory Research: Unique Aspects of Working in American Indian and Alaska Native Contexts. The scheduled presenters were unable to attend because they’re off in DC meeting with the President, but two very experienced experts pinch hit: Bill Freeman, director of tribal community health programs and human protections administrator at Northwest Indian College, and Deborah Morton, institutional review board (IRB) chair of the Southern California Tribal Health Clinic at the Indian Health Council.

Dr. Freeman opened the session by sharing a presentation from the National Congress of American Indian’s Puneet Sahota. (These slides and other materials are available online for conference attendees on the 2012 AER Conference Passport.) Dr. Sahota’s slides provided a helpful introduction to challenges for university IRBs in the review of research with tribal communities and community-based participatory research (CBPR) more generally. The session highlighted the need to protect whole communities in addition to individual study participants; jurisdictional issues that may arise in work with tribal IRBs; questions about when research begins; and how the IRB ought to regard community members who are also co-researchers.

Dr. Morton shared insights from the front lines of research oversight in a clinic that serves American Indian people in Southern California. She described how establishing a Tribal IRB fits into Dickert & Sugarman’s framework outlining four ethical goals of community consultation in research:

  1. Minimize risk beyond the original vision of the researcher (who may or may not have community experience); 
  2. Enhances the direct and indirect benefits of the healthcare delivery structure through return of data and results and empowerment of the community to decide what research will be done, how it will be done, and how much will be done; 
  3. Assures ethical and political legitimacy through the meaningful involvement of community members in decision making. And finally; and 
  4. Contributes to a sense of shared responsibility.

I’m running out of space, but I want to share Dr. Freeman’s review of what communities and Tribes want from research:

  • Protect and benefit the community
  • Respect elders and knowledge of the community 
  • Respect community’s strengths and survival 
  • Incorporate traditional spirituality into the project 
  • Promote resilience, assist community in its activation and problem finding, addressing, solving 
  • Have pride in the community’s role in the CBPR project 
  • Have ownership in/of the project 
  • Respect/promote tribal sovereignty and community power 
  • Express hope for the community’s future 

I think it’s really important for IRBs that review Tribal research to be aware of these desires.