This research ethics series uses the story of Dan Markingson’s participation in a clinical trial of anti-psychotic drugs at the University of Minnesota, his suicide 2004 while participating on the study, and subsequent events as a case study in which to explore various aspects of clinical trial conduct. In previous posts, I’ve looked at issues of “good clinical practices” and ethics: consent, investigator responsibilities and conflicts of interest. Then I examined the university’s response and then turned to the importance of careful documentation of consent. Next, I explained how I was transformed by Dan’s story from looking at it simply as an objective case lesson in clinical trial ethics, to an advocate for an independent investigation of the University of Minnesota. In the most recent post, I shared reactions to the announcement that Mark Rotenberg, the UMN’s General Counsel, was leaving Minnesota to assume a similar post, now as Counsel and Vice-President at Johns Hopkins University.
Today is the 9th anniversary of Dan Markingson’s death. No matter the year, the yahrzheit (as known in my tradition) always seems to grow in oppressiveness as the day approaches, like a summer thunderstorm, and then there is release and scent of fresh air and renewal. It is, for many, a time of deep reflection, as one tries to find meaning in the death and loss.
I have never met Mary Weiss nor Mike Howard, Dan’s family, yet as I have learned and written about Dan’s tragic death at the hands of the University of Minnesota, I feel like I have come to know them on some deep level.
I struggle with my own losses. It is at these times that I envy those who believe in an afterlife and being reunited in a “better” place, something that is incomprehensible to me. I am comforted, though, by rituals, and the rhythm of seasons and nature. . .by some readings, and by contemplating legacies.
As I write this, I flashed back to a powerful story I heard on NPR many years ago, called “Shattered but Still Whole.” It was recounted by Saki Santorelli at a meditation workshop I attended and in his book Heal Thy Self.
“Next we hear about a sculptor. A large, powerfully built man who fabricates and welds metal, building huge and sometimes towerlike structures. We find out that this sculptor lost his leg some years ago, is unable to wear a prosthesis, and continues to sculpt with one leg. He is asked if his work now is different from when he had two legs. The man responds clearly, deliberately. “This is what I do now. This is normal.” We come to find out that this sculptor has been chosen to create the centerpiece of the exhibit. He has sculpted a sphere out of stone, perhaps marble or granite. We are told that it was perfect, with an uninterrupted, smoothly polished surface. After the sphere was completed, the artist smashed it, then put it back together with bolts, metal fasteners, and bonding agents. Now–full of fractures–it is sitting in the middle of the gallery, in the middle of America, labeled SHATTERED BUT STILL WHOLE.”
The only book about death and grieving that ever touched me was Naomi Levy’s “To Begin Again.” She encourages us, "No matter what we have lost in our lives, there is always something that survives to start over with. There is always some shard, some shred of hope, some way to begin again.” And she, too, talks about our lives being shattered, asking, “What are we to do with the broken pieces of ourselves? All too often we try to ignore them, deny them, or obliterate them, never realizing that they will be with us for the rest of our days on this earth. We try to bury our shattered parts because we see them as a sign of weakness, as a painful reminder of our vulnerability. But our broken pieces are a seat of wisdom and insight and compassion within us. They are holy and sacred and ought to be preserved.”
So Mary’s life has been shattered by the death of her only son. There is no sense to be made of this.
The only thing that we can offer this mother, still grieving, is that Dan has left a legacy. Although Dan died 9 years ago, his memory and lessons from his death are not fading. Instead, there is a growing sense of outrage. There is now a petition to Governor Mark Dayton calling for an independent investigation of the University, which has garnered almost 2500 signatures, including those of three former editors of the New England Journal of Medicine, a former editor of the British Medical Journal, the editor of the Lancet, and numerous scholars from all over the world. I hope that Dan’s family will find some small consolation knowing that his story has reached thousands, all over the world, and that the lessons of his tragic death in this clinical trial—which seems so unethical to many—are being used to inform numerous students of research and ethics.
As Robert Kennedy said, not that long before his tragic death, “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.”
Mary, have hope. Dan’s legacy is growing and will have a lasting impact. It already has.
To take action:
Sign the petition to Governor Mark Dayton calling for an independent investigation of the University on Change.org, via the hyperlink.
Dr. Carl Elliott has generously offered to educate groups or classes about bioethics and this case. He can be reached at the Center for Bioethics.
Angel of Grief image Scott Loftesness
"Shattered but Still Whole,” courtesy Saki Santorelli, from Heal Thy Self
Yahrtzeit candle - Elipongo/wikimedia
"Molecules to Medicine" banner © Michele Banks