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

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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).

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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.

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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.

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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).

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.

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.

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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.

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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).

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See Zussman , supra note 15.

Bosk C. , All God's Mistakes: Genetic Counseling in a Pediatric Hospital (Chicago: University of Chicago Press, 1992).

See Mesman J. Anspach R. , supra note 15; Guillemin J. Holmstrom L. , Mixed Blessings: Intensive Care for Newborns (New York: Oxford, 1986).

See Chambliss , supra note 5.

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.

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).

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See De Vries Subedi , supra note 18, at xiv.

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).

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Fetters M. Doukas D. Phan K. , “Family Physicians' Perspectives on Genetics and the Human Genome Project”, Clinical Genetics 56 (1999): 28–34.

See Blackhall , supra note 14.

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.

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Harries U. Fentem P Tuxworth W. , “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.

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See Silverman , supra note 54.

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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.

Schniederman L. Glimer T. Teetzel H. , “Effects of Ethics Consultations on Non-beneficial Life Sustaining Treatments in the Intensive Care Setting: A Randomized Controlled Trial,” JAMA 290 (2003): 1166–1172.

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.

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.

See Molewijk , supra note 62 at 70–71.

See Molewijk , supra note 62 at 69.

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.

At <http://www.kuleuven.ac.be/cbmer/files/norms.pdf> (last visited March 9, 2004).

At <http://www.xs4all.nl/%7Eozse/research_eng.htm> (last visited March 9, 2004).

See Berger , supra note 44, at 41.

Elliott C. , “Diary: The Ethics of Bioethics,” London Review of Books 24, no. 23 (2002), 40.

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).

See the section, “Consequences of moral-advice giving.”

45 C.F.R. §46.107 (1991)

The Netherlands, Wet Medisch-Wetenschappelijk Onaerzoek Met Mensen [Medical Research Involving Human Subjects Act], Section 16.

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