Another spectacular winter morning in Dunedin, New Zealand. Clear blue sky, frost on the ground, lush green hills plunging into the South Pacific. It is hard to complain about the setting, still less about the kindness and decency of the inhabitants. It has been nearly 22 years since my wife and I first landed in Dunedin, in August of 1990, when I began a postdoctoral fellowship at the newly established Bioethics Centre at the University of Otago. I still wonder why we ever left.
It was an extraordinary time for bioethics in New Zealand. In 1990, the country was still reeling from the shock of a medical research scandal – the “unfortunate experiment” at the National Women’s Hospital in Auckland. In that study, which had begun in 1966 and continued for another two decades, Dr. Herbert Green, an obstetrician-gynecologist, deliberately withheld treatment of 160 women with abnormal cervical smears in an effort to prove his misguided hypothesis that the cervical abnormalities would not lead to cervical cancer. Green enrolled women in the study without their knowledge or consent. Three of Green’s colleagues at Auckland University, Bill McIndoe, Jock McLean, and Ron Jones, tried to put a halt to the experiment for years, but they were ignored until they published a 1984 article in Obstetrics and Gynecology showing that the untreated women were 25 times more likely to develop invasive cancer. According to the Cartright Inquiry, the governmental commission set up to investigate the scandal, this amounted to a total of approximately 40 women developing invasive cancer, many of whom died.
The Medical Council of New Zealand eventually brought disciplinary action against Green and his superior, Dr. Denis Bonham. While the charges against Green were dropped because of Green’s poor health, the Council found Bonham guilty of disgraceful conduct. More importantly, the results of the Cartwright Inquiry led to dramatic changes in the oversight of medical research in New Zealand – among them the establishment of regional ethics committees, the creation of an Office of Health and Disability Commissioner, a code of rights for health consumers, and the appointment of an independent patient advocate at Auckland Women’s Hospital. Many of my friends and colleagues at the University of Otago were involved in the Cartwright Inquiry and its aftermath, perhaps most notably Dr. Charlotte Paul, who served as a medical adviser.
Two decades later, it is hard for me to avoid contrasting the ”unfortunate experiment” in Auckland to the psychiatric research scandal at the University of Minnesota, where I work now. The circumstances surrounding the suicide of Dan Markingson in an AstraZeneca-sponsored clinical trial of Seroquel were very different from those in Auckland, yet they were no less shocking: a floridly psychotic young man under a commitment order, who had been repeatedly judged incompetent to make his own medical decisions, was coerced into a highly profitable, scientifically dubious clinical trial over the objections of his mother, whose desperate warnings were subsequently ignored until the young man finally stabbed himself to death.
The two scandals have some similarities. In both cases, the wrongdoing was brought to public attention not by regulators or oversight bodies, but by journalists. The “unfortunate experiment” in Auckland was brought to light by Sandra Coney and Phillida Bunkle in Metro magazine, while Paul Tosto and Jeremy Olson exposed the Markingson scandal in the St. Paul Pioneer Press. Also, in both cases, the scandals were symptomatic of deeper ethical pathology. At the National Women’s Hospital, medical students had been performing vaginal examinations on anesthetized women without their knowledge, and house staff had practiced inserting and removing IUDs on anesthetized women before their hysterectomies. At the University of Minnesota, administrators have repeatedly covered up or minimized questionable financial dealings and conflicts of interest, even in the face of sustained public scrutiny. (See this, this, this, this, and this.)
Most importantly, administrators at both institutions downplayed or ignored the warnings of their own faculty members. In late 2010, after my article about the Markingson case appeared in Mother Jones, several University of Minnesota faculty members and I wrote a public letter to the board of regents asking for an external investigation. In February 2011, when the regents refused our request, Dr. Aaron Friedman, the Dean of the Medical School and Vice-President for Health Sciences, sent an email to the faculty making it clear where he stood on the matter. “As a result of this case, our department of psychiatry has experienced significant scrutiny and withering criticism over the past five years, and through it all, the faculty of the department have performed remarkably well in fulfilling its mission,” Friedman wrote. He went on to praise the psychiatrists behind the trial in which Markingson died, Dr. Stephen Olson and Dr. Charles Schulz, and to voice his strong support for industry-funded research. As for the death of Markingson, Friedman wrote, “I see the Regents’ statement as the end of the University’s review of this specific patient’s case.”
Here is where the responses to the Markingson case and to the “unfortunate experiment” differ. In Auckland, the Metro article by Coney and Bunkle set off a national debate, and eventually, sweeping reforms. These reforms came about in part due to the refusal of many New Zealand academics, physicians, and feminist activists to let the matter die. But at Minnesota, the forceful responses by Friedman and the general counsel, Mark Rotenberg have successfully silenced internal dissent at the university.
This silence is understandable, but unfortunate. The issues at stake go well beyond the death of Dan Markingson. If more research deaths are uncovered, will the faculty at the University of Minnesota be able to say, “We did all we could to prevent them?”
Acknowledgement: This was first posted on the Chronicle of Higher Education Brainstorm blog.