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Stigmatization of Not-Knowing as a Public Health Tool

Published online by Cambridge University Press:  25 March 2021

JOHANN-CHRISTIAN PÕDER
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Abstract

Predictive interventions and practices are becoming a defining feature of medicine. The author points out that according to the inner logic and external supporters (i.e., state, industry, and media) of modern medicine, participating in healthcare increasingly means participating in knowing, sharing, and using of predictive information. At the same time, the author addresses the issue that predictive information may also have problematic side effects like overdiagnosis, health-related anxiety, and worry as well as impacts on personal life plans. The question is raised: Should we resort to stigmatization if doing so would increase participation in predictive interventions, and thereby save healthcare costs and reduce morbidity and premature death? The paper concludes that even if such a strategy cannot be ruled out in some forms and contexts, we ought to be very cautious about the dangers of shame and stigmatization.

Keywords

predictive medicinepublic health ethicsstigmatizationshamenudgingpredictive informationright not to knowautonomyhuman dignitysocial justice
Type
Special Section: Decision Making and Leadership in Crises and Beyond
Information
Cambridge Quarterly of Healthcare Ethics , Volume 30 , Issue 2 , April 2021 , pp. 328 - 342
Copyright
© The Author(s), 2021. Published by Cambridge University Press

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Footnotes

Acknowledgments: I am indebted to Niklas Juth, Gert Helgesson, and John-Stewart Gordon for helpful comments and discussions, as well as to Sean Winkler for linguistic edits. An earlier version of this article was presented at the International Bioethics Retreat in Paris, June 2019.

References

Notes

1. Barsky, AJ. The paradox of health. The New England Journal of Medicine 1988;318(7):414–8CrossRefGoogle ScholarPubMed.

2. Armstrong, D. The rise of surveillance medicine. Sociology of Health and Illness 1995;17(3):393–404 CrossRefGoogle Scholar, at 401. Compare Sulik, G. Managing biomedical uncertainty: The technoscientific illness identity. Sociology of Health and Illness 2009;31(7):1059–76.CrossRefGoogle ScholarPubMed

3. Aronowitz, R. Risky Medicine: Our Quest to Cure Fear and Uncertainty. Chicago: The University of Chicago Press; 2015.CrossRefGoogle Scholar

4. Barsky, AJ. The patient with hypochondriasis. New England Journal of Medicine 2001;345(19):1395–9CrossRefGoogle ScholarPubMed. There are also signs that certain diagnoses (also predictive) increase suicide rates, compare Wahlin TBR. To know or not to know: A review of behaviour and suicidal ideation in preclinical Huntington’s disease. Patient Education and Counseling 2007;65(3):279–87; Fang F, Valdimarsdóttir U, Fürst CJ, Hultman C, Fall K, Sparén P, et al. Suicide among patients with amyotrophic lateral sclerosis. Brain 2008;131(10):2729–33.

5. Peters, SA, Laham, SM, Pachter, N, Winship, IM. The future in clinical genetics: Affective forecasting biases in patient and clinician decision making. Clinical Genetics 2014;85(4):312–7.CrossRefGoogle ScholarPubMed

6. Juth, N. Values and Rights: The Morality of Presymptomatic Genetic Testing. Göteborg: Acta Universitatis Gothoburgensis; 2012, at 304–8.Google Scholar

7. Berkman, BE, Hull, SC. The “right not to know” in the genomic era: Time to break from tradition? The American Journal of Bioethics 2014;14(3):28–31.CrossRefGoogle ScholarPubMed

8. Bayer, R. Stigma and the ethics of public health: Not can we but should we. Social Science & Medicine 2008; 67(3):463–72.CrossRefGoogle Scholar

9. See note 8, Bayer 2008, at 467. Compare Puhl, M, Heuer, AC. Obesity stigma: Important considerations for public health. American Journal of Public Health 2010;100(6):1019–28, at 1019–20.CrossRefGoogle ScholarPubMed

10. See note 8, Bayer 2008, at 467.

11. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall 1963, at 3.

12. See note 8, Bayer 2008, at 469. Compare Herek GM. Beyond “homophobia”: Thinking about sexual prejudice and stigma in the twenty-first century. Sexuality Research and Social Policy 2004;1:6–24 and Burris S. Disease stigma in U.S. public health law. Journal of Law, Medicine and Ethics 2002;30:179–90.

13. See note 8, Bayer 2008, at 469. Compare Link B, Phelan J. Conceptualizing stigma. Annual Review of Sociology 2001;27:363–85, at 377.

14. See note 8, Bayer 2008, at 469.

15. See note 8, Bayer 2008, at 468 (italic in original).

16. See note 8, Bayer 2008. Compare Kass N. An ethics framework for public health. The American Journal of Public Health 2001;91:1776–82, at 1778.

17. See note 8, Bayer 2008, at 470.

18. See note 8, Bayer 2008.

19. Burris, S. Stigma, ethics and policy: a commentary on Bayer’s “Stigma and the ethics of public health: Not can we but should we”. Social Science & Medicine 2008; 67(3):473–5.CrossRefGoogle Scholar

20. See note 19, Burris 2008.

21. See note 19, Burris 2008.

22. Bell K, Salmon A, Bowers M, Bell J, McCullough L. Smoking, stigma and tobacco ‘denormalization’: Further reflections on the use of stigma as a public health tool. A commentary on Social Science & Medicine’s Stigma, Prejudice, Discrimination and Health Special Issue (67:3). Social Science & Medicine 2010;70(6):795–9. Compare Wiley LF. Tobacco denormalization, anti-healthism, and health justice. 18 Marquette Benefits and Social Welfare Law Review 2017; 203–53.

23. See note 22, Bell et al. 2010, at 797.

24. Eyal N. Nudging by shaming, shaming by nudging. International Journal of Health Policy and Management 2014;3:53–6, 53.

25. See note 24, Eyal 2014, at 54.

26. Silverman R, Wiley LF. Shaming vaccine refusal. Journal of Law, Medicine and Ethics 2017;45(4):569–81.

27. Compare Nuffield Council on Bioethics. Public Health: Ethical Issues. Cambridge: Cambridge Publishers Ltd., Nuffield Council on Bioethics; 2007.

28. See note 26, Silverman, Wiley 2017, at 577.

29. Compare, for example, Harris J, Keywood K. Ignorance, information and autonomy. Theoretical Medicine 2001;22:415–36; Rhodes R. Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy 1998;23(1):10–30; Bortolotti L. The relative importance of undesirable truths. Medicine, Health Care, and Philosophy 2013;16(4):683–90; Laurie G. Recognizing the right not to know: Conceptual, professional and legal implications. Journal of Law, Medicine and Ethics 2014;42(1)53–63; Andorno, R. The right not to know: An autonomy-based approach. Journal of Medical Ethics 2004;30(5):435–9; Husted, J. Autonomy and a right not to know. In: Chadwick R, Levitt M, Shickle D, eds. The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility, 2nd ed., New York: Cambridge University Press 2014, 24–37.

30. Helgesson G. Autonomy, the right not to know, and the right to know personal research results: What rights are there, and who should decide about exceptions? The Journal of Law, Medicine & Ethics 2014;42(1):28–37.

31. See note 29, Husted 2014.

32. See note 29, Rhodes 1998, at 18.

33. See note 29, Harris, Keywood 2001, at 431.

34. See note 29, Andorno 2003 and Husted 2014; compare Schroeder A. Das Recht auf Nichtwissen im Kontext prädiktiver Gendiagnostik. Wiesbaden: Springer VS; 2015.

35. See note 29, Husted 2014, at 31.

36. See note 29, Husted 2014, at 31–2.

37. See note 30, Helgesson 2014, at 32.

38. Wehling P. Fighting a losing battle? The right not to know and the dynamics of biomedical knowledge production. In: Gross M, McGoey L, eds. Routledge International Handbook of Ignorance Studies. London: Routledge; 2015:206–14, 210; Takala T. Genetic ignorance and reasonable paternalism. Theoretical Medicine and Bioethics 2001;22:485–91.

39. See note 6, Juth 2012, at 310.

40. See note 30, Helgesson 2014, at 29–30.

41. Skrabanek P. The Death of Humane Medicine and the Rise of Coercive Healthism. London: Social Affairs Unit; 1994, at 11.

42. See note 3, Aronowitz 2015, at 202.

43. See note 7, Berkman, Hull 2014, at 29.

44. Ewert, B. Economization and marketization in the German healthcare system: How do users respond? German Policy Studies 2009;5(1):21–44 Google Scholar; Ewert, B. Vom Patienten zum Konsumenten? Nutzerbeteiligung und Nutzeridentitäten im Gesundheitswesen. Wiesbaden: Springer VS; 2013.CrossRefGoogle Scholar

45. Rose, N. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty‐First Century. Oxford: Princeton University Press; 2007.CrossRefGoogle Scholar

46. Novas, C, Rose, N. Genetic risk and the birth of the somatic individual. Economy and Society 2000;28(4):484–513.Google Scholar

47. Greenhalgh, S. Fat‐Talk Nation: The Human Costs of America’s War on Fat. Greenhalgh, Susan. Ithaca, NY: Cornell University Press; 2015.Google Scholar

48. Greenhalgh, S. Bad biocitizens? Latinos and the US “obesity epidemic”. Human Organization 2014; 73(3): 267–76.CrossRefGoogle Scholar

49. Ott, K, Fischer, T. Can objections to individualized medicine be justified? In: Dabrock, P, Braun, M, Ried, J, eds. Individualized Medicine Between Hype and Hope. Wien: LIT; 2012:173–200.Google Scholar

50. Childress, JF, Faden, RR, Gaare, RD, Gostin, L, Kahn, J, Bonnie, RJ, et al. Public health ethics: Mapping the terrain. Journal of Law, Medicine & Ethics 2002;30(2):169–77.CrossRefGoogle ScholarPubMed

51. See note 16, Kass 2001, at 1776.

52. See note 50, Childress et al. 2002, at 174.

53. Compare Ross LF. Mandatory versus voluntary consent for newborn screening? Kennedy Institute of Ethics Journal 2010;20(4):299–328. Ross argues for a tired approach which combines opt-out and opt-in parental consent. Opt-out (formal and informal) options are common also in many European countries; compare van der Burg S, Verweij M. Maintaining trust in newborn screening compliance and informed consent in the Netherlands. The Hasting Center Report 2012;42(5):41–7.

54. Faden R, Powers M, Kass N. Warrants for screening programs: Public health, legal and ethical frameworks. In: Faden R, Geller G, Powers M, eds. AIDS, Women and the Next Generation. New York: Oxford University Press 1991; 3–26.

55. See note 24, Eyal 2014.

56. See note 16, Kass 2001, at 1778; compare critically Buchanan DR. Autonomy, paternalism, and justice: Ethical priorities in public health. American Journal of Public Health 2008;98(1):15–21.

57. For a cautious stand on this, see Juth N, Munthe C. The Ethics of Screening in Health Care and Medicine: Serving Society or Serving the Patient? Dordrecht: Springer; 2011.

58. See note 24, Eyal 2014, at 53.

59. Compare the insightful modernization of Wilson and Jungner criteria for screening by Niklas Juth and Christian Munthe in Juth and Munthe 2011, at 149–157 (see note 57).

60. See note 26, Silverman, Wiley 2017, at 578.

61. See note 24, Eyal 2014, at 54.

62. Alamar B, Glantz SA. Effect of increased social unacceptability of cigarette smoking on reduction in cigarette consumption. American Journal of Public Health 2006;96(8):1359–63; Kim SH, Shanahan J. Stigmatizing smokers: Public sentiment toward cigarette smoking and its relationship to smoking behaviors. Journal of Health Communication 2003;8(4):343–67.

63. See note 22, Bell et al. 2010.

64. Helweg-Larsen, M, Sorgen, LJ, Pisinger, C. Does it help smokers if we stigmatize them? A test of the stigma-induced identity threat model among U.S. and Danish smokers. Social Cognition 2019;37(3):294–313.CrossRefGoogle ScholarPubMed

65. See note 19, Burris 2008 and note 24, Eyal 2014.

66. Eyal N. Nudge, embarrassment, and restriction—replies to Voigt, Tieffenbach, and Saghai. International Journal of Health Policy and Management 2015;4(1):53–4, at 54.

67. Compare Wiley, LF. Health law as social justice. Cornell Journal of Law and Public Policy 2014;24(1):47–105.Google Scholar

68. See note 50, Childress et al. 2002, at 174.