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Reading Trust between the Lines: “Housekeeping Work” and Inequality in Human-Subjects Review

  • LAURA STARK
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Notes

1. Buchan N, Croson R, Dawes R. Swift neighbors and persistent strangers: A cross-cultural investigation of trust and reciprocity in social exchange. American Journal of Sociology 2002;108:182.

2. Stepanikova1 I, Mollborn S, Cook K, Thom D, Kramer R. Patients’ race, ethnicity, language, and trust in a physician. Journal of Health and Social Behavior 2006;47(4):390–405.

3. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. Journal of General Internal Medicine 1999;14(9):537–46.

4. U.S. Code of Federal Regulations, Title 45 (Public Welfare) Department of Health and Human Services, Part 46 “Protection of Human Subjects,” revised 15 Jan 2009.

5. Stark L, Hedgcoe A. A practical guide to research ethics. In: Bourgeault IL, DeVries R, Dingwall R, eds. The Sage Handbook of Qualitative Methods in Health Research. New York: Sage; 2010.

6. Heimer C, Petty J. Bureaucratic ethics: IRBs and the legal regulation of human subjects research. Annual Review of Law and Social Science 2010;6:601–26.

7. Murphy E, Dingwall R. Informed consent, anticipatory regulation and ethnographic practice. Social Science & Medicine 2007;65:2223–34.

8. Brown PR, Alaszewski A, Swift T, Nordin A. Actions speak louder than words: The embodiment of trust by healthcare professionals in gynae-oncology. Sociology of Health & Illness 2011;33:280–95.

9. Hedgecoe A. Trust and regulatory organisations: The role of local knowledge and facework in research ethics review. Social Studies of Science 2012;42(5):662–83.

10. Tilly C. Trust and Rule. New York: Cambridge University Press; 2005.

11. Giddens A. The Consequences of Modernity. Cambridge: Polity; 1990.

12. Power M. Audit Society: Rituals of Verification. Oxford: Oxford University Press; 1997.

13. Shapiro S. The social control of impersonal trust. American Journal of Sociology 1987;93(3):623–58, at 641.

14. Hoffman SG. Simulation as a social process in organizations. Sociology Compass 2007;1(2):613–36.

15. Stark L. Behind Closed Doors: IRBs and the Making of Ethical Research. Chicago: Chicago University Press; 2012.

16. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW; 1979.

17. Hall M. The importance of trust for ethics, law, and public policy. Cambridge Quarterly of Healthcare Ethics 2005;14:156–67.

18. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Appendix to report and recommendations: Institutional review boards. In: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: Department of Health, Education and Welfare; 1978 available at http://www.hhs.gov/ohrp/policy/belmont.html (last accessed 11 June 2013).

19. 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. Arlington, VA: James Bell; 1998, at 37.

20. DeVries RG, Forsberg CP. What do IRBs look like? What kind of support do they receive? Accountability in Research: Policies and Quality Assurance 2002;9(3–4):199–216.

21. Candilis PJ, Lidz CW, Appelbaum PS, Arnold RM, Gardner W, Myers S, et al. The silent majority: Who speaks at IRB meetings? IRB: Ethics & Human Research 2012;34(4):15–20.

22. Taylor H, Currie P, Kass N. A study to evaluate the effect of investigator attendance on the efficiency of IRB review. IRB: Ethics & Human Research 2008;30(1):1–5.

I am grateful to Erin Kelly and Nathan Pauly for their careful research assistance and scholarly housekeeping work. Feedback from Ray De Vries, Jill Fisher, Alistair Sponsel, and two anonymous reviewers helped me immensely as I worked on this manuscript and research. Conversations with Gary Shaw opened up my thinking on theories of trust and on Giddens in particular. I thank them all.

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Cambridge Quarterly of Healthcare Ethics
  • ISSN: 0963-1801
  • EISSN: 1469-2147
  • URL: /core/journals/cambridge-quarterly-of-healthcare-ethics
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