PRIM&R is pleased to share a post from Jim Gearhart, a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who will blog here, on Ampersand, about the conference to give our readers an inside peek of what happened December 4-7 in Baltimore, MD.
Tucked into an airplane seat on my way home from the 2014 Advancing Ethical Research conference, I reflected on my experience. I had a fantastic time as a member of the PRIM&R Blog Squad; thank you for taking the time to read my posts and thanks to PRIM&R for the chance to contribute to Ampersand. For my final post, I thought I’d share some quotes and reflections about the conference.
Near the end of this year’s conference, an acquaintance sighed and said, “I need some time to decompress. And now I have a lot of things to do when I get back.”
It’s a sign of a good conference when afterwards everything reminds you of something you learned from the event. After the last session I checked my email, and noticed a banner ad. An advertisement for travel to a destination that I researched just a few days before appeared. Similarly, on my way to the airport, I used Google Maps to gauge my travel time, which it quickly did after determining my current location. In both of these instances, I recalled discussions about consent and privacy and tried to remember when, exactly, I had agreed to give Google access to my search and location data. And when my taxi passed a John Hopkins University building, I reflected of the closing panel, which told the story of Henrietta Lacks and the recent mapping of her genome from her “immortal” cells. Reminders about the conference were showing up everywhere.
“That’s why I come to PRIM&R,” someone said over lunch. “To see what’s going to happen next year.”
I was struck by how the conference topics covered the past, the present, and the future of research ethics. The future came first, as John T. Wilbanks’ demonstrated how smart devices can change how we collect data and communicate with participants in a stimulating keynote address. The themes of mobile technology, privacy, and data that he introduced continued throughout the conference.
“It’s a great way to remind ourselves about our history,” a faculty member said following Sunday’s keynote address.
The conference started with a glimpse of the future, and it ended with looks back to the past. Sunday’s keynote by Susan E. Lederer, PhD, reflected on the roots of the ethical and regulatory framework for research with human subjects, and reinforced the importance of continuous introspection. What might research look like today if Henry Beecher had not persevered and revealed the questionable practices underlying biomedical research during his time? Sunday closed with another reference to the past, as Henrietta Lacks’ descendants shared their perspectives on the continuing legacy of the HeLa cell line.
Another reflection on the past, as well as the future, came in the form of the keynote address by Anthony Fauci, MD. Dr. Facui recounted the early, uncertain forays into HIV/AIDS research of the 1980s, as well similar we are asking in the wake of today’s Ebola crisis.
“A great amount of material.”
Between the future and the past, the conference also addressed the present. Many sessions explored the complicated ethical questions around incidental findings in research. Others proposed ways to improve communication with participants, and many provided practical guidance for running IRB meetings. The speakers who came did not have all of the answers, and they did not always convince their audiences, but they all challenged those in attendance to think.
“We seem stuck here,” one audience member said at a session about improving informed consent.
The conduct of research has changed dramatically since Henry Beecher’s 1966 seminal essay “Ethics and Clinical Research,” but we still have our share of challenges. And few—if any—of them have easy solutions. One presentation described resistance to changing informed consent processes as “if it’s not that broken, why fix it.” In another session, a three-year compilation of data showed that processing times at IRBs had not improved. Performance, at least by that measure, remained the same. But not everyone in that audience even agreed that turnaround times were a way to measure IRB success.
The questions were hard, and the discussions at the 2014 AER Conference important. I expect we’ll all be reminded of those discussions again as we travel home, settle back into our routines, and look to see how we can improve our own processes and procedures.
PRIM&R would like to thank Krystal for her participation in our 2014 AER Conference Blog Squad. If you’d like to participate in 2015, you can learn more by visiting our website. Additionally, if you have a session or speaker idea for 2015, please share it via our Call for Session Proposals and Speaker Suggestions.