“OH MY GOD, PRIM&R’s gonna have a BLOG,” I thought to myself when I heard from Anne Meade, our amazing webmistress, that this longtime dream of mine was about to become a reality. So here I am, launching Ampersand, a new cyber-place in cyberspace where PRIM&R staff, board, members, experts in the research ethics and administration fields, and other assorted friends can electronically hold forth on, well, on whatever! Research with humans, animals, and stem cells, medicine and patient care, and health and science policy might be among the topics, although sights seen while hiking on a crisp fall weekend might just as easily inspire one of our bloggers. No limits, at least not for now.
So today’s “whatever” consists of a few topics that I spend a lot of time thinking about, to wit, healing, connecting, creating community, and re-visioning power. These themes figured prominently in a keynote address I heard at the American Society of Bioethics and Humanities meeting. Stephen Bergman‘s (hereinafter “Dr. B”) talk was drawn largely from House of God, his highly evocative account of his medical training at a thinly veiled and “thickly famed” Boston teaching hospital. This novel goes far beyond 30 year old war stories, though, and includes lessons for daily work life that I found resonant and helpful wherever one works and whatever one does.
Dr. B cites four “laws” that can help anyone working in any institution “stay human.”
1 – Stay connected! Isolation is deadly.
2 – Speak up when necessary in order to call attention to perceived failings in the system. Advocacy and appropriate empowerment is essential to your survival as a human being, and keeping concerns to yourself will eventually take its toll. Don’t though, speak up in isolation; speak up in community and with connectivity. Or, as the title of a new Broadway play puts it, “If You See Something, Say Something.”
3 – Learn empathy, which, according to Dr. B, requires that physicians forget what they learned in medical school. How does one learn empathy? “Through suffering with someone,” he maintains.
4 – Learn your “trade,” whatever that trade might be, by being “out in the world,” and by developing compassion along with the job skills you’re cultivating.
Unfortunately, there are no guidebooks or manuals to help us develop empathy or compassion, and Dr. B illustrates this fact by telling the story of a physician who was working in a leper colony with the most marginalized population imaginable. An old medical school friend visited her and said, “I wouldn’t do that kind of work for a million dollars,” and the doctor working with lepers replied “neither would I.” Not everyone can be so selfless or altruistic, but all of us can, with awareness and effort, become more attuned to the needs and suffering of others.
Suffering is all around us no matter what we do or where we work, and each of us has those “hey, wait a second” interpersonal moments every day. Dr. B says that our challenge is to recognize, pay attention to, and then act on those “flashes” so they don’t fade away without first producing a sense of mutual connection or mutual empathy. Dr. B and his wife, Janet Surrey, have written extensively about the healing power of such connections, using both the founders of Alcoholics Anonymous and couples counseling to demonstrate how openness and respect in each interaction can help ensure that each person feels seen and each feels that the other is seen, too.
Wondering why I’m recounting the highlights of his talk in my first Ampersand blog? Well, it’s in part because PRIM&R was founded, almost 35 years ago now, to help ensure that the power imbalance that exists between those who serve as research subjects and those who are conducting—or financially benefitting from—the research be recognized and, wherever possible, addressed and ameliorated via the gate-keeping function of institutional review boards (IRBs) and institutional animal care and use committees (IACUCs). PRIM&R tries to help those “on the ground” create a culture of ethics, as well as compliance, and these four pieces of advice seemed like good rules to live by.
Dr. B’s focus on empathy, respect, and openness, translates into “good consent forms and honest, sensitive consent conferences” in the human subjects world, and they are also among the core values necessary to meaningfully and adequately protect those who participate in research.
So there you have it… our very first flight, or dive, depending on how you feel about it, into the blogosphere. It was a little heavier than I expected, and I don’t want to leave you with visions of suffering “dancing” in your heads, so how about taking a look at this fun clip when you have a chance. I’ve seen it a lot and it never fails to bring a smile to my face.
And may you now let me and the Ampersand readers know what you think makes for a strong and “ethical culture” wherever one works and whatever one does!
Onward in hope, onward in community, and onward in justice!
P.S. Given the fact that today is the US presidential election, I could not resist the urge to include a little humor. Please note that this is political satire (of the musical kind for you “Les Miserables” fans) and not political commentary. Just my way of lightening the mood on an otherwise very intense day…