by Susan Trinidad, MA
It’s now more than a month after the 2012 Advancing Ethical Research (AER) Conference, and I’m back in cold, gray Seattle. But it’s not just the memory of sunshine in San Diego that I’ve found myself returning to. Since I returned home, I’ve benefited from my attendance at the conference in several different ways:
- I’m a member of the Planning Committee for the upcoming Institute of Medicine workshop titled “Driving Patient Demand for Shared Decisions, Better Value, and Care Improvement.” My 2012 AER Conference experience, and particularly the comparative effectiveness discussion in didactic session A4, has helped me to think about the ways in which the traditional bright line between clinical care and health research is being challenged, which has been useful in our discussions and planning. I’ve been able to put forward suggestions for speakers from among the experts I heard speak in San Diego as well.
- I’ve been thinking more about how the theory of moral entanglement presented by Henry Richardson during Panel IV fits with what we’re doing in the NEXT Medicine Study, a project that involves the return of incidental findings in genomic research. I’ve ordered a copy of his book, Moral Entanglements: The Ancillary-Care Obligations of Medical Researchers, and I’m looking forward to exploring how study participants’ vulnerability may create a duty of care on the part of researchers.
- As a researcher who works with American Indian and Alaska Native communities, I was disappointed to see that didactic session E24 on tribal participatory research seemed to be attended mainly by people who are already doing this work and are well informed. It’s got me thinking about whether my colleagues and I at the Center for Genomics and Healthcare Equality could help to bring those with less familiarity – whether administrators, IRB members, or researchers – into the discussion, in the local context. What would be an effective mode of outreach, I wonder?
- I became interested in Laura Stark’s book, Behind Closed Doors: IRBs and the Making of Ethical Research, through her participation in the AER Conference. Not only is it a well-written and really interesting account of the history of institutional review boards (IRBs), but it also offers some important sociological insights into how IRBs do their work and why the way in which IRBs work matters in the grand scheme. It was an important reference in helping me prepare a grant that proposes to do some observational work with IRBs.
- And, last but not least, Jonathan Haidt’s lunchtime discussion about his book, The Righteous Mind: Why Good People Are Divided by Politics and Religion, provided useful insights and data that came in handy during family debates over the holidays!
These are all examples of why I keep coming back to PRIM&R’s AER Conference: because I learn new things, I meet new and interesting people, and I hear ideas that spark new connections in my own work.