Hostname: page-component-848d4c4894-5nwft Total loading time: 0 Render date: 2024-05-09T21:02:40.961Z Has data issue: false hasContentIssue false
  • English
  • Français

How Can We Help? From “Sociology in” to “Sociology of” Bioethics

Published online by Cambridge University Press:  01 January 2021

Raymond De Vries
Get access Rights & Permissions [Opens in a new window]

Extract

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call (with not-so-subtle pejorative overtones) the bioethical project.

Two decades ago - when bioethics was just getting up on its organizational feet - Renée Fox and Judith Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to say ifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 32 , Issue 2 , Summer 2004 , pp. 279 - 292
Copyright
Copyright © American Society of Law, Medicine and Ethics 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Campbell, C., “Ethics in the Twilight Zone,” Hastings Center Report 33, no. 2 (2003): 44–46, at 44.CrossRefGoogle Scholar
Zussman, R., “The Contributions of Sociology to Medical Ethics,” Hastings Center Report 30, no. 1 (2000): 7–11, at 7CrossRefGoogle Scholar
Fox, R. Swazey, J., “Medical Morality is not Bioethics — Medical Ethics in China and the United States,” Perspectives in Biology and Medicine 21 (1984): 336–360, at 337–338 and 360.CrossRefGoogle Scholar
Guillemin, J., “Bioethics and the Coming of the Corporation to Medicine,” in De Vries, R. Subedi, J., eds., Bioethics and Society (Upper Saddle River, NJ: Prentice Hall, 1998): 60–77, at 62.Google Scholar
Chambliss, D., Beyond Caring: Hospitals, Nurses, and the Social Organization of Ethics (Chicago: University of Chicago Press, 1996), at 92–93.CrossRefGoogle Scholar
Imber, J., “Medical Publicity before Bioethics: Nineteenth Century Illustrations of Twentieth Century Dilemmas,” in De Vries, R. Subedi, J., eds., Bioethics and Society (Upper Saddle River, NJ: Prentice Hall, 1998): 16–37, at 30.Google Scholar
Bosk, C., “Now that We Have the Data, What Was the Question?,” American Journal of Bioethics 2 no. 4 (2002): 21–23, at 21 and 22.CrossRefGoogle Scholar
This attitude toward sociologists’ evaluations of bioethics is compounded by the confusion of their work with less scholarly, more polemical, and ideologically driven evaluations of bioethics like those offered by Smith, Wesley J., Culture of Death: The Assault on Medical Ethics in America (San Francisco: †Encounter Books, 2000).Google Scholar
Gorovitz, S., “Baiting Bioethicits,” Ethics 96 (1986): 356–374, at 365.CrossRefGoogle Scholar
de Wachter, M., “Sociology and Bioethics in the U.S.A.,” Hastings Center Report 28, no. 5 (1998): 40–42. Other disciplines — most notably medical humanities — are critical of bioethics, but in most cases these criticisms look more like internecine struggles for control of the profession.CrossRefGoogle Scholar
Chambers, T., “Centering Bioethics,” Hastings Center Report 30, no. 1 (2000): 22–29.Google Scholar
Philosophers are critical of bioethics (see, for example, Marino, G., “Avoiding Moral Choices,” Commonweal, March 23, 2001: 11–15), but their work does not seem to arouse the ire of bioethicists.Google Scholar
Lock, M., “Situated Ethics, Culture, and the Brain Death Problem in Japan,” in Hoffmaster, B., ed., Bioethics in a Social Context (Philadelphia, PA: Temple University Press, 2001): 39–68.Google Scholar
Blackhall, L. Murphy, S. Frank, G. Michel, V. Azen, S., “Ethnicity and Attitudes Toward Patient Autonomy,” JAMA 274 (1995): 820–825; Carrese, J. Rhodes, L., “Western Bioethics on the Navajo Reservation. Benefit or Harm?” JAMA 274 (1995): 826–829; Press, N. Browner, C., “Risk, Autonomy, and Responsibility: Informed Consent for Prenatal Testing,” Hastings Center Report 25, no. 3 (1995): S9–S12; Rapp, R. “Accounting for Amniocentesis,” in Lindenbaum, S. Lock, M., eds., The Anthropology of Medicine and Everyday Life (Berkeley, CA: University of California Press, 1993); Marshall, P., “A Contextual Approach to Clinical Ethics Consultation,” in Hoffmaster, B., ed., Bioethics in a Social Context (Philadelphia, PA: Temple University Press, 2001): 137–152.Google Scholar
Anspach, R., Deciding Who Lives: Fateful Choices in the Intensive Care Nursery (Berkeley, CA: University of California Press, 1993); Zussman, R., Intensive Care: Medical Ethics and the Medical Profession (University of Chicago Press, 1992); Mesman, J., Evaren Pioniers: Omgaan met twijfel in de intensive care voor pasgeborenen [Experienced Pioneers: An Ethnography of the Intensive Care Unit for Newborns], (Amsterdam: Aksant, 2002).Google Scholar
This is not to assert the superiority of one approach over another. I simply note that the different traditions of anthropology and sociology incline us to ask different questions.Google Scholar
Jones, N., “Validity and Applicability of the Social Sciences to and for Bioethics,” American Journal of Bioethics 3, no. 3 (2003); 33–34, at 34.CrossRefGoogle Scholar
De Vries, R. Subedi, J., “Preface,” in De Vries, R. Subedi, J., eds., Bioethics and Society (Upper Saddle River, NJ: Prentice Hall, 1998): xi–xix, at xvii.Google Scholar
Durkheim, E., The Division of Labor in Society (New York: Free Press, 1933). I am not the first to reflect in the relationship between sociology and bioethics. For other efforts see, Bosk, C., “Professional Ethicist Available: Logical, Secular, Friendly,” Daedalus 128, no. 4 (1999):47–68; Zussman, R., “The Contributions of Sociology to Medical Ethics,” Hastings Center Report 30, no. 1 (2000): 7–11; Evans, J., “A Sociological Account of the Growth of Principlism,” Hastings Center Report 30, no. 5 (2000): 31–38.Google Scholar
Parsons, T., The Social System (Glencoe, IL: Free Press, 1951): 428–479.Google Scholar
Merton, R. Reader, G. G. Kendall, P. L., The Student-Physician: Introductory Studies in the Sociology of Medical Education (Cambridge,. MA: Harvard University Press, 1957); Becker, H. et al. , Boys in White: Student Culture in Medical School (Chicago: University of Chicago Press, 1961).CrossRefGoogle Scholar
Sudnow, D., Passing On: The Social Organization of Dying (Englewood Cliffs, NJ: Prentice Hall, 1967); Glaser, B. G. Strauss, A. L., Time for Dying (Chicago: Aldine, 1968).Google Scholar
Freidson, E., The Profession of Medicine: A Study of the Sociology of Applied Knowledge(New York: Dodd, Mead, 1970).Google Scholar
Goffman, E., Stigma: Notes on the Management of Spoiled Identity (Englewood Cliffs, NJ: Prentice Hall, 1963); E. Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (Chicago: Aldine, 1961).Google Scholar
Conrad, P. Schneider, J., Deviance and Medicalization: From Badness to Sickness (St Louis: Mosby, 1980).Google Scholar
Barber, B. et al. , Research on Human Subjects: Problems of Social Control in Medical Experimentation (New York, Russell Sage Foundation, 1973).Google Scholar
Gray, B., Human Subjects in Medical Experimentation: A Sociological Study of the Conduct and Regulation of Clinical Research (New York: Wiley, 1975).Google Scholar
Bosk, C., Forgive and Remember: Managing Medical Failure (Chicago: University of Chicago Press, 1979).Google Scholar
Bosk, C., Forgive and Remember: Managing Medical Failure, second edition (Chicago: University of Chicago Press, 2003): 246–247.CrossRefGoogle Scholar
Fox, R., Experiment Perilous (Glencoe, IL: Free Press, 1959); Fox, R. Swazey, J., The Courage to Fail (Chicago: University of Chicago Press, 1974).Google Scholar
Davis, F., “The Courage to Fail,” (book review) The American Journal of Sociology 81 (1975): 417–420, at 420.CrossRefGoogle Scholar
Fox, R. Swazey, J., Spare parts: Organ Replacement in American Society (New York: Oxford University Press, 1992): 210.Google Scholar
Rothman, D., Strangers at the Bedside: How Law and Bioethics Transformed Medical Decision Making (New York: Basic Books, 1991).Google Scholar
See Zussman, , supra note 15.Google Scholar
Bosk, C., All God’s Mistakes: Genetic Counseling in a Pediatric Hospital (Chicago: University of Chicago Press, 1992).Google Scholar
See Mesman, J. Anspach, R., supra note 15; Guillemin, J. Holmstrom, L., Mixed Blessings: Intensive Care for Newborns (New York: Oxford, 1986).Google Scholar
See Chambliss, , supra note 5.Google Scholar
Evans, J., Playing God: Human Genetic Engineering and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002). See also Evans, J., “A Sociological Account of the Growth of Principlism,” Hastings Center Report 30, no. 5 (2000): 31–38.Google Scholar
De Vries, R. Subedi, J., eds., Bioethics and Society (Upper Saddle River, NJ: Prentice Hall, 1998); Hoffmaster, B., ed., Bioethics in a Social Context (Philadelphia, PA: Temple University Press, 2001).Google Scholar
Bosk, C., “Professional Expertise and Moral Cowardice: ‘Counterfeit Courage’ and the ‘Non-Combatant,’” Paper delivered at the School of Social Science, Institute for Advanced Study, Princeton, NJ, 29 October 2004.Google Scholar
See De Vries, Subedi, , supra note 18, at xiv.Google Scholar
This story is not unique: Other social scientists have described the delays and stonewalling they faced in their attempts to get IRB approval of research on IRBs. See Casper, M., The Making of the Unborn Patient (New Brunswick, NJ: Rutgers University Press, 1998).Google Scholar
Straus, R., “The Nature and Status of Medical Sociology,” American Sociological Review 22 (1957): 200–204, at 203, 204.CrossRefGoogle Scholar
Berger, P., Invitation to Sociology (Garden City, NY: Anchor Books, 1963).Google Scholar
Mills, C. W., The Sociological Imagination (New York: Oxford, 1959).Google Scholar
Doukas, D. Fetters, M. Coyne, J. McCullough, L., “How Men View Genetic Testing for Prostate Cancer Risk: Findings from Focus Groups,” Clinical Genetics 58 (2000): 169–176.CrossRefGoogle Scholar
Fetters, M. Doukas, D. Phan, K., “Family Physicians’ Perspectives on Genetics and the Human Genome Project”, Clinical Genetics 56 (1999): 28–34.CrossRefGoogle Scholar
See Blackhall, et al. , supra note 14.Google Scholar
See Carrese, Rhodes, , supra note 14. Leigh Turner offers a thorough review of similar studies, which he sees as an “anthropological turn” in bioethics. See Turner, L., “Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings,” Health Care Analysis 11, no. 2 (2003): 99–117.Google Scholar
Bell, J. Whiton, J. Connelly, S., Final Report: Evaluation of NIH Implementation of Section 491 of the Public Health Service Act, Mandating a Program of Protection for Research Subjects (1998). Available at: <http://ohrp.osophs.dhhs.gov/hsp_report/hsp_final_rpt.pdf> (last visited March 12, 2004).+(last+visited+March+12,+2004).>Google Scholar
DeVries, R. Forsberg, C., “What do IRBs Look Like, What Kind of Support Do They Receive?” Accountability in Research 9 (2002): 199–216, at 213.CrossRefGoogle Scholar
Goldman, J. Katz, M., “Inconsistency and Institutional Review Boards,” JAMA 248 (1982): 197–202.CrossRefGoogle Scholar
Harding, T. Ummel, M., “Evaluating the Work of Ethical Review Committees: An Observation and a Suggestion,” Journal of Medical Ethics 15 (1989): 191–194.CrossRefGoogle Scholar
Harries, U. Fentem, P Tuxworth, W. et al. , “Local Research Ethics Committees: Widely Differing Responses to a National Survey Protocol,” Journal of the Royal College of Physicians of London 28 (1994): 150–154; Foster, C., “Why Do Research Ethics Committees Disagree with Each Other?” Journal of the Royal College of Physicians of London 29 (1995): 315–318; Garfield, P., “Cross-district Comparisons of Applications to Research Ethics Committees,” British Medical Journal 311 (1995): 660–661; Dal Ré, R. Espada, J. Ortega, R., “Performance of Research Ethics Committees in Spain,” Journal of Medical Ethics 25 (1999): 268–273; Silverman, H. Hull, S. Sugarman, J., “Variability Among Institutional Review Boards’ Decisions within the Context of a Multi-Center Trial,” Critical Care Medicine 29 (2001): 235 – 241.Google Scholar
Stair, T. Reed, C. Radeos, M. et al. , “Variation in Institutional Review Board Responses to a Standard Protocol for a Multicenter Trial,” Academic Emergency Medicine 8 (2001): 636–641.Google Scholar
Goldstein, A. Frasier, P. Curtis, A. et al. , “Consent Form Readability in University-Sponsored Research,” Journal of Family Practice 42 (1996): 606–11.Google Scholar
See Silverman, et al. , supra note 54.Google Scholar
Corrigan, O., “Empty Ethics: The Problem with Informed Consent,” Sociology of Health and Illness 25 (2003): 768–92.Google Scholar
Cho, M. Shohara, R. Schissel, A. Drummond, R., “Policies on Faculty Conflicts of Interest at US Universities,” JAMA 284 (2000): 2203–2208.CrossRefGoogle Scholar
Schulman, K. Seils, D. Timbie, J. Sugarman, J. Dame, L. Weinfurt, K. Mark, D. Califf, R., “A National Survey of Provisions in Clinical-Trial Agreements between Medical Schools and Industry Sponsors,” N. Engl. J. Med. 347 (2002): 1335–1341.CrossRefGoogle Scholar
Schniederman, L. Glimer, T. Teetzel, H. et al. , “Effects of Ethics Consultations on Non-beneficial Life Sustaining Treatments in the Intensive Care Setting: A Randomized Controlled Trial,” JAMA 290 (2003): 1166–1172.CrossRefGoogle Scholar
Molewijk, A. Stiggelbout, A. Otten, W. Dupuis, H. Kievit, J., “Implicit Normativity in Evidence-Based Medicine: A Plea for Integrated Empirical Ethics Research,” Health Care Analysis 11 (2003); 69–92, at 70.CrossRefGoogle Scholar
Berg, M. Mol, A., eds., Ingebouwde Normen [Built-in Norms] (Utrecht, The Netherlands: Van Der Wees, 2001). See also Berg, M. ter Meulen, R. van den Burg, M., “Guidelines for Appropriate Care: The Importance of Empirical Normative Analysis,” Health Care Analysis 9(2001): 77–99.Google Scholar
See Molewijk, et al. , supra note 62 at 70–71.Google Scholar
See Molewijk, et al. , supra note 62 at 69.Google Scholar
Mol, A., “Wat Dianogtische Technieken Doen: Het Voorbeeld van De Bloedsuikermeter,” [What Diagnostic Techniques Do: The Example of the Blood Sugar Meter] in Berg, M. Mol, A., eds., Ingebouwde Normen [Built-in Norms] (Utrecht, The Netherlands: Van Der Wees, 2001): 143–157, at 154–156.Google Scholar
At <http://www.kuleuven.ac.be/cbmer/files/norms.pdf> (last visited March 9, 2004).+(last+visited+March+9,+2004).>Google Scholar
At <http://www.xs4all.nl/%7Eozse/research_eng.htm> (last visited March 9, 2004).+(last+visited+March+9,+2004).>Google Scholar
See Berger, , supra note 44, at 41.Google Scholar
Elliott, C., “Diary: The Ethics of Bioethics,” London Review of Books 24, no. 23 (2002), 40.Google Scholar
For examples of OHRP oversight of human subjects protection programs see “OHRP Compliance Activities: Determination Letters” at <http://ohrp.osophs.dhhs.gov/detrm_letrs/lindex.htm> (last visited March 9, 2004).+(last+visited+March+9,+2004).>Google Scholar
See the section, “Consequences of moral-advice giving.”Google Scholar
45 C.F.R. §46.107 (1991)CrossRefGoogle Scholar
The Netherlands, Wet Medisch-Wetenschappelijk Onaerzoek Met Mensen [Medical Research Involving Human Subjects Act], Section 16.Google Scholar
De Vries, R., “Book Review — T. Stevens, ‘Bioethics in America: Origins and Cultural Politics,’” Journal of American History 89 (2002): 316–318, at 318.CrossRefGoogle Scholar
Brody, B. Dubler, N. Blustein, J. Caplan, A. Kahn, J. Kass, N. Lo, B. Moreno, J. Sugarman, J. Zoloth, L., “Bioethics Consultation in the Private Sector,” The Hastings Center Report 32, no. 3 (2002): 14–20.Google Scholar
Moreno, J., “Neuroethics: An Agenda for Neuroscience and Society,” Nature Reviews Neuroscience 4 (2003): 149–153.CrossRefGoogle Scholar
Miles, S., “Deaths Between Bedrails and Air Pressure Mattresses,” Journal of the American Geriatrics Society 50 (2002): 1124–1125.CrossRefGoogle Scholar
Elliott, C., “A New Way to be Mad,” The Atlantic Monthly 286, no. 6 (2000), 72–74, 76+.Google Scholar