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Cited by 99Ethics in Clinical ResearchEthics and bioethics in healthcareQualitative Research Methods and Ethics

Communication and Miscommunication in Informed Consent to Research

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SANKAR, PAMELA·2004·Medical Anthropology Quarterly
DOI 10.1525/maq.2004.18.4.429
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Abstract

Biomedical ethics require that research subjects be aware that the drugs they take or procedures they undergo are designed to fulfill the conditions of the experiment and not to benefit a subject's health. This apparently straightforward distinction between research and treatment is a source of much controversy and misunderstanding. Ethicists have labeled this problem the “therapeutic misconception.” This misconception and, more broadly, informed consent have been studied extensively. Nonetheless, the therapeutic misconception persists among research subjects. This paper argues that one factor overlooked in the persistence of the therapeutic misconception is the effect of the theoretical paradigm that guides the practice and analysis of informed consent. The paradigm poses an idealized model of communication that ignores social context. This paper examines informed consent practices associated with a cancer research trial to demonstrate an alternative approach to studying informed consent to research. Through analysis of informed consent session transcripts, it demonstrates the importance of taking account of not only what is said, but how and by whom it is said.

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  1. [1]1. Passages quoted are identified by a code that denotes the subject, the dose level to which he or she was assigned, and the investigator making the comment. Subjects are de- noted by randomly assigned letters of the alphabet and dose levels are denoted by 1, 2, or 3. Investigators are identified as follows: the surgeon by "S," the medical geneticist by "G," and the two oncologists by "O1" and O2." Thus, the identification code "B2S" refers to a com- ment made by the surgeon, about subject "B," who was enrolled at the second dosing level. REFERENCES CITED
  2. [24]24. Lysaught, M. Therese 1998 Commentary: Reconstructing Genetic Research as Research. Journal of Law, Medicine & Ethics 26:48-54.
  3. [33]33. Schain, Wendy S. 1994 Barriers to Clinical Trials-Part II: Knowledge and Attitudes of Potential Partic- ipants. Cancer Supplement 74(9):2666-2671.
  4. [34]34. Shannon, Claude, and Warren Weaver 1949 A Mathematical Model of Communication. Urbana: University of Illinios Press.
  5. [39]39. Tuchman, G. 1978 Making News: A Study in the Construction of Social Reality. New York: The Free Press.

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Authors
SANKAR, P.
Affiliations
University of Pennsylvania (US)
Corresponding author
SANKAR, PAMELA
ORCID
SANKAR, PAMELA
Venue
Medical Anthropology Quarterly
Publisher
Wiley
Published
2004-12
Volume
18
Issue
4
Pages
429-446
ISSN
  • 0745-5194 (ISSN-L)
  • 1548-1387
DOI
10.1525/maq.2004.18.4.429
OpenAlex
W1982243738
Cited by
99
References
42
Citations by year
2026: 2 · 2025: 1 · 2024: 3 · 2023: 1 · 2022: 2 · 2021: 3 · 2020: 2 · 2019: 5 · 2018: 7 · 2017: 2 · 2016: 1 · 2015: 4 · 2014: 6 · 2013: 8 · 2012: 9
FWCI
3.79
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 1133 d)
Locations
  • Medical Anthropology Quarterly (publishedVersion)
  • PubMed (publishedVersion)
  • ScholarlyCommons (University of Pennsylvania) (submittedVersion)
  • DigitalGeorgetown (Georgetown University Library) (submittedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Social Sciences › Sociology and Political Science › Qualitative Research Methods and Ethics
Keywords
informed consent, therapeutic misconception, research ethics, communication, miscommunication, cancer clinical trials, social context of communication, biomedical ethics
MeSH terms
Communication, Communication Barriers, Humans, Informed Consent, Models, Psychological, United States, Genetic Therapy, Clinical Trials, Phase I as Topic

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