by Susan Trinidad, MA, Research Scientist in the Department of Bioethics & Humanities at the Center for Genomics & Healthcare Equality at the University of Washington
Hello out there! I’m very happy to be attending the Advancing Ethical Research (AER) Conference again this year, and I’m especially pleased to have the chance to share some of the meeting highlights with the larger PRIM&R community.
I’m up to my ears in research ethics. I’ve served as a member of the University of Washington’s only combined biomedical/behavioral institutional review board (IRB) since 2009. In my day job, I conduct empirical ethics research. And, of course, I strive to carry out all that ethics research … ethically! The AER Conference is always a great opportunity to hear about others’ research and to glean lessons I can apply in my own research and bring back to share with my IRB colleagues.
“Empirical ethics research,” at least in my work, is shorthand for interview and focus group studies aimed at understanding how people (e.g., patients, primary care physicians, IRB members, geneticists, life scientists) think about the ethical implications of a given issue. When all goes well, the results of this work can inform practice and contribute to policy development. For example, in one study, I am helping to figure out how investigators doing basic genetic research can meet the ethical obligation of sharing what they’re learning with the Alaska Native communities engaged in those studies. In another, I’ll be interviewing patients who’ve been referred for a possible familial cancer syndrome and have had their whole genome sequenced. We’ll talk about what it was like for them to receive their test results around hereditary cancer, and also about their feelings, thoughts, and questions about other information (incidental findings) generated by this comprehensive look at their DNA.
This year, there are several sessions that are directly related to studies I am working on. I’m looking forward to learning more from the experts about comparative effectiveness research (Session A04) and tribal participatory research approaches (Session E24). I’m eager to hear the latest on the debate around return of individual genetic research results (Plenary Panel IX), too, and from some of the leading researchers in this area. As a bonus, that session will be moderated by Pearl O’Rourke, so I know it will be lively as well as informative.
Now that I’ve almost recovered from the frenzy around the Presidential election, I’m looking forward to Jonathan Haidt’s luncheon discussion of his new book, The Righteous Mind: Why Good People Are Divided by Politics and Religion. I’m also planning to attend Laura Stark’s Research Ethics Book Group Lunch about Behind Closed Doors: IRBs and the Making of Ethical Research. Having encountered certain challenges in recruiting IRB staff and committee members for interviews in my own work, I’ll be interested to hear her insights about doing research on and within the human subjects protection community.
And, I won’t lie – it doesn’t hurt a bit to leave the rain and gray of Seattle for a week in San Diego! I’ll do my best to weave some of the sunshine into my posts.