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they would prefer to avoid it. But is that strategy intellectually honest? As early as 1996, George Annas argued that it
was not. [F]or many potential research subjects, deception
or self-deception is inherent in our current research endeavors, Annas wrote,17 comparing the language of clinical research to the political sloganeering of Orwells 1984. Even
a cursory examination of modern human experimentation
demonstrates, he said, the pervasiveness of three doublespeak concepts: experimentation is treatment, researchers
are physicians, and subjects are patients (p. 300).
It is hard to disagree with Annas. Yet it is even harder
to fight against the linguistic current. The shifts that Annas
warned about in 1996 are now so fully entrenched that
they strike no one as unusual, much less controversial.
Even Annas himself occasionally used the phrase medical
research, rather than experimentation, in his critique. I
have done the same here, of course. Doing otherwise would
strike many readers as an unnecessary provocation. To the
extent that this is true, the fight has already been lost.
Alan Milstein says that when he is deposing clinical investigators, he often asks them why they dont use the word
experiment when they talk to subjects.Inevitably, they say
that the word carries too much baggage. To which Milstein
replies, That is what is so wonderful about language.Words
carry meaning and history.
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4.Advisory Committee on Human Radiation Experiments, Final
Report of the Advisory Committee on Human Radiation Experiments
(Washington, D.C.: U.S. Government Printing Office, 1995), 734.
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September 5, 2008, http://www.bio-itworld.com/issues/2008/
sept/patient-recruitment.html; B. Herskovits, Returning the
Favor, Pharmaceutical Executive, January 23, 2007, athttp://www.
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Evans, Should Patients Be Allowed to Veto Their Participation in
Clinical Research?,Journal of Medical Ethics30 (2004): 198-203.
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Association302, no. 1 (2009): 67-72.
8.R. Dresser, Wanted: Single White Male for Medical
Research, Hastings Center Report 22, no. 1 (1992): 24-29; D. A.
DeBruin, Justice and the Inclusion of Women in Clinical Studies:
An Argument for Further Reform,Kennedy Institute of EthicsJournal
4, no. 2 (1994): 117-46; S. Sherwin, Women in Clinical Studies:
A Feminist View,Cambridge Quarterly of Healthcare Ethics3, no. 4
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9.J. Kahn, A. Mastroianni, and J. Sugarman, eds.,Beyond Consent:
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10.National Bioethics Advisory Commission,Ethical and Policy
Issues in Research Involving Human Participants, vol. 1, Report and
H AS TI N GS C E N TE R REPORT