perspective
REPORT
field notes
From the foundation up. In 2019, The Hastings Center will
celebrate its fiftieth anniversary. It is more than a bit staggering to think how
far we have come since 1969. When I oated the idea of a center on bioeth-
ics to my friend and neighbor, psychiatrist Willard Gaylin, at a Christmas
party in 1968even before the word bioethics was usedI had only
the fuzziest idea of where that would take us. Neither Will nor I had run
anything, nor did we know how to raise money to support an organization.
We would and did learn how, but much of what we did in those early years
was made up on the y. We not only had to invent an organization but no
less to invent a field of research and education on issues still little noticed by
the public or academics.
Out of curiosity, I recently googled bioethics. I was astonished at what
I found and by the sheer quantity of what is going on. According to some
searches, there are at least fifty journals in bioethics, rank ordered in terms
of impact, as well as thousands of articles, rank ordered as well. There
are also some fifty bioethics blogs. One site claimed that there are over six
hundred job openings in the field.
Many medical and nursing schools have bioethics programs, and prob-
ably nearly all have at least a course. Bioethics is a popular undergraduate
offering as well. I have a granddaughter at Boston University who took a
bioethics course and whose textbook was the wonderful Principles of Bioeth-
ics, by Tom Beauchamp and James Childress. Her instructor, she was proud
to say, knew of me. Getting the praise of a grandchild is harder than getting
that of ones peers.
As for the substance of bioethics, not just its numbers, I am sorry that
Albert Jonsenwho recently won the Centers Beecher Awardhas not
written a follow-up to his superb book The Birth of Bioethics, which took the
field up to the 1980s. By then, bioethics was well established but was com-
ing into a time of some significant changes. The most important, perhaps,
was the growing domination in bioethics of physicians teaching in medical
school programs, with a declining inuence in the field from faculty mem-
bers in the humanities, who had been dominant in the 1970s. Philosophers
were strong for a time and pushed ethical theory to the forefront of the field,
but the force of that approach was weakened by social scientists and others
with strong interest in empirical work. The 1990s opened our own version
of the regnant culture wars, with a strong backlash from conservatives who
saw bioethics dominated by liberals fixated on libertarian values and dismis-
sive of religious perspectives. That war has faded out. What cooled it a bit,
I think, was the creation through the 1980s and 1990s of religious journals
and blogs, which at least made the culture wars less visible to the public. A
so-far-enduring feature of bioethics has been the steady succession of federal
bioethics commissions, going back to the mid-1970s. Whether the new fed-
eral budget in the Trump regime will continue that fine bipartisan tradition
is not yet known, but it does not look hopeful.
I am now in my mid-eighties, and Will his early nineties. Many of the
leading figures of our earlier days have died, and younger people have taken
their place, just as it should be. Bioethics ourishes.
Daniel Callahan
Cofounder and President Emeritus
THE HASTINGS CENTER
VOLUME 47, NO. 3 MAY-JUNE 2017
Editor: Gregory E. Kaebnick
Managing Editor: Laura Haupt
Contributing Editors: Rebecca Dresser,
Susan Gilbert, and Stephen R. Latham
Art Director: Nora Porter
Editorial Board:
Nancy Berlinger, Susan Gilbert, Michael K.
Gusmano, Laura Haupt, Gregory E. Kaeb-
nick, and Erik Parens, The Hastings Center
Tod S. Chambers, Northwestern University
Rebecca Dresser, Washington University
in St. Louis
Carl Elliott, University of Minnesota
Joseph J. Fins, Cornell University
Christine Grady, National Institutes of Health
Brad Gray, The Urban Institute
Bruce Jennings, Center for Humans and Nature
Eric Juengst, University of North Carolina
at Chapel Hill
Hilde Lindemann, Michigan State University
Jamie Nelson, Michigan State University
Tia Powell, Albert Einstein College of Medicine
Ilina Singh, University of Oxford Spain, Macchiarini was offered a fac-
Benjamin S. Wilfond, Seattle Childrens
Research Institute; University of Washington
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The Anatomy of Research Scandals
BY CARL ELLIOTT
F
or the past two years, I have taught a seminar on sion broadcaster, aired a devastating documentary film by
medical research scandals. The syllabus looks like a Bosse Lindquist called The Experiments. The film presented
highlight reel of exploitation and abuse: children fed damning evidence that Macchiarini had falsified research
plutonium-laced breakfast cereal, prisoners dosed with the data, deceived patients, and performed deadly experimental
active ingredient in Agent Orange, mental patients given transplants on patients who did not have life-threatening
psychedelic drugs and massive electroconvulsive therapy be- illnesses. Four surgeons at the Karolinska Institute had filed
fore being sent into curare-induced paralysis and a coma. I an internal complaint against Macchiarini two years earlier,
designed the seminar to crush the idealism of future physi- but the result had been stonewalling and intimidation. Yet
cians by illuminating the dark patterns that research scan- within weeks of The Experiments, both the head of the Karo-
dals typically follow. linska Institute and the secretary of the Nobel Assembly had
The most recent scandal we examined happened to be resigned. Macchiarini is currently facing criminal charges of
one of the most lurid. In June 2014, when NBC aired its involuntary manslaughter.
two-hour special A Leap of Faith, Paolo Macchiarini was As sensational as the Macchiarini scandal is, there is at
a charismatic thoracic surgeon, a mo- least one way in which it is typical: dis-
torcycle-riding Italian who did the n senters who try to use internal institu-
seemingly impossible, going where no tional channels to expose the abuse of
other has yet dared. After performing
a series of novel trachea transplants in Internal channels research subjects rarely succeed. Inter-
nal channels failed with the Tuskegee
syphilis study, with the unfortunate
ulty position at Stockholms prestigious usually fail. experiment at National Womens
Karolinska Institute, the home of the Hospital in New Zealand, with the ra-
Nobel Prize in Medicine or Physiol- n diation experiments at the University
ogy. There he began an even more au- of Cincinnati, with the Protocol 126
dacious series of experimental treatments: transplants of a cancer trials at the Fred Hutchinson Cancer Center, and
stem-cellseeded artificial trachea. Those transplants trans- with the Markingson and Huber cases at the University of
formed Macchiarini into a celebrity. Minnesota. Of course, it is possible that there are other, as-
As A Leap of Faith was being filmed, Macchiarini de- yet-unknown cases in which institutions did the right thing
clared his love for Benita Alexander, one of the films pro- for mistreated research subjects yet managed to keep the
ducers. A proposal of marriage soon followed. Macchiarini entirety of the affairs quiet. But if the cases in my course
said he had arranged for the wedding to take place at the are typical, it is only when the press exposes a scandal that
Papal Palace of Castel Gandolfo, with Pope Francis offici- justice is done.
ating and a guest list including the Obamas, Elton John, When social scientists ask witnesses to corruption or
and Vladimir Putin. Alexander commissioned a celebrity safety violations why they remained silent, they usually
designer to make her wedding gown, and she quit her job at get one of two answers. First, many people are afraid that
NBC to move to Europe. Not until two months before the blowing the whistle will be futile; second, theyre afraid of
wedding was scheduled did Alexander discover that she had retribution. With medical research scandals, unfortunately,
been conned. There would be no papal ceremony. The self- both of those fears appear well-founded. One of the most
glorifying stories Macchiarini had told her were completely unusual things about the Karolinska Institute scandal is
fabricated. the fact that Macchiarini was eventually punished. Many
In February 2016, a week after these revelations appeared researchers who mistreat human subjects escape unscathed,
in Vanity Fair, SVT, the Swedish national public televi- while the whistle-blowers who spoke out against them are
vilified. And until that situation changes, witnesses to mis-
Carl Elliott is a professor in the Center for Bioethics and the treatment will have little reason to speak out.
Department of Pediatrics at the University of Minnesota. DOI:
10.1002/hast.704