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The Ethics of Screening in Health Care and Medicine

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 51))

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Abstract

So far, we have been considering numerous factors that are relevant to answer the main question of this book: what screening programmes are morally justified? As we have seen, this hinges on so many factors that it may be hard to see the full picture. In this chapter, we would like to bring these factors together in order to assess different screening programmes that are implemented or suggested. We will do this by considering four contested (types of) screening programmes. Some of these are already up and running, while others are in development or, at least, seriously contemplated for the future. The number of screening programs up and running in the world are legio. They become even more numerous if we include suggested ones. A selection has to be made in order to make the discussion manageable. But why have we selected these ones? Primarily because they are of current interest, controversial, and telling regarding the general debate on which screening is defensible. Non-invasive prenatal diagnosis (Section 5.1) is the next frontier of prenatal diagnosis. Screening for fragile X (Section 5.2) is, similarly, an instance of the next frontier for neonatal screening, since it is an instance of screening for a disorder for which there are few medical benefits of screening (which is a clear difference from PKU-screening). In this regard, it is a case that illuminates the wider question of which benefits that are relevant for assessing (neonatal) screening programs.

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Notes

  1. 1.

    The careful reader will note that we have represented cases of prenatal, neonatal, and adult screening, but not adolescent screening. The reason is that adolescent screening programmes are rarely suggested (although there are exceptions, e.g. ATD-screening, see Section 3.3.2) and even more rarely implemented. One notable exception is HPV (human papillomavirus). However, then it is seldom screening in isolation that is discussed but screening in conjunction with vaccination, which brings a host of ethical problems of their own (Dawson, 2007). For an excellent discussion of these problems, see Malmqvist et al. (2010).

  2. 2.

    To go on adding similar cases of adult screening programmes, e.g. colon cancer screening, would only lead to tiresome repetition. We trust that interested readers would be able to extrapolate from the cases presented.

  3. 3.

    Wright and Burton (2008). RHD typing can be used to avoid maternal immune response in RHD-negative women carrying an RHD-positive foetus.

  4. 4.

    See e.g. Wright and Chitty (2009).

  5. 5.

    Chiu et al. (2011).

  6. 6.

    Lun et al. (2008).

  7. 7.

    For instance, the false negative rate in RHD typing by NIPD is estimated to 0.2% today, and can be expected to be reduced further (van der Schoot et al., 2008).

  8. 8.

    Wright and Burton (2008), p. 147.

  9. 9.

    Ravitsky (2009), p. 516.

  10. 10.

    de Jong et al. (2010), p. 273.

  11. 11.

    Ravitsky (2009).

  12. 12.

    Wright and Burton (2008).

  13. 13.

    Ravitsky (2009), p. 733.

  14. 14.

    Juth (2005), chapter 3.

  15. 15.

    Ravitsky (2009), p. 733.

  16. 16.

    Saltvedt (2005).

  17. 17.

    Schmitz et al. (2009).

  18. 18.

    Juth (2005), p. 105.

  19. 19.

    Schmitz et al. (2009).

  20. 20.

    There is plenty empirical research to demonstrate that procedures of informed consent are less than satisfactory when it comes to standard prenatal screening, see e.g. Renner (2006); and Favre et al. (2007).

  21. 21.

    Schmitz et al. (2009).

  22. 22.

    Zamerowski et al. (2001).

  23. 23.

    At least this is clear in the bioethical literature, e.g. from the growing controversies about luck egalitarianism, see Segall (2010).

  24. 24.

    de Jong et al. (2010), pp. 273–274.

  25. 25.

    van den Heuvel et al. (2009).

  26. 26.

    Hall et al. (2010), p. 250.

  27. 27.

    Hall et al. (2010), p. 250.

  28. 28.

    Munthe (1996), chapter 4.

  29. 29.

    Munthe (2008).

  30. 30.

    Benn and Chapman (2010).

  31. 31.

    See Section 5.1 and Deans and Newson (2010).

  32. 32.

    Connor and Ferguson-Smith (1997), p. 137.

  33. 33.

    Bailey et al. (2008), p. 699.

  34. 34.

    See e.g. Skinner et al. (2003).

  35. 35.

    While, e.g., the immediately visible autism-type symptoms of fragile X may be noticed rather soon, it is of both psychosocial and therapeutic importance to know whether the symptoms are caused by fragile X or not. For instance, while the classic sign of lack of eye contact, physical touch and verbal interaction may, in the general autism case, often be due to a straightforward inability of the child (possible to gradually repair through special training and adapted surroundings), in the specific case of fragile X, it rather seems to be due to these basic social and communicative behaviours causing discomfort, therefore being rationally avoided by the child. See, e.g., Dew-Hughes (2003); and Jenssen Hagerman and Hagerman (2002).

  36. 36.

    Already in ACMG’s framework, these considerations are included (Baily and Murray, 2008, p. 28). See also Bailey et al. (2005a).

  37. 37.

    It has proven very difficult to draw a morally relevant distinction between disease and other properties (Juengst, 2003).

  38. 38.

    Baily and Murray (2008).

  39. 39.

    Bailey et al. (2008).

  40. 40.

    Bailey et al. (2008), p. 697.

  41. 41.

    Davis et al. (2006).

  42. 42.

    Personal information from geneticist Erik Björck, Karolinska institute. See also Bailey et al. (2008).

  43. 43.

    Bailey et al. (2008), pp. 697–698.

  44. 44.

    Juth (2005), chapter VI.

  45. 45.

    Bailey et al. (2005b).

  46. 46.

    Juth (2005), pp. 362–368.

  47. 47.

    Gøtzsche and Nielsen (2009), p. 4.

  48. 48.

    A pioneer in this regard has been Czech, Dublin-based expert in oncology and preventive medicine, Petr Skrabanek, who published a long series of critical appraisals of mammography screening in The Lancet and other leading medical journals, as well as instigating general discussions of the ethics of medical prevention, starting as early as 1985 (Skrabanek, 1985). See also Skrabanek (2000).

  49. 49.

    For instance, Stephen Duffy from the UK, Robert Smith from USA and László Tabár and Lennarth Nyström from Sweden. The following articles together give a fairly good overview of the debate: Duffy et al. (2002) (including discussion); Freedman et al. (2004); Törnberg and Nyström (2009a, b); Gøtzsche and Jörgensen (2009a, b); and Gøtzsche and Nielsen (2009).

  50. 50.

    See Gøtzsche and Nielsen (2009), pp. 15–16, for further references.

  51. 51.

    Törnberg and Nyström (2009b).

  52. 52.

    Zackrisson et al. (2006).

  53. 53.

    Gøtzsche and Nielsen (2009), p. 2.

  54. 54.

    McPherson (2010).

  55. 55.

    Justman (2010). Justman discusses PSA screening for prostate cancer, but the point regarding offsetting harms with benefits is general or at least applies also to mammography, given the great similarities in terms of harms and benefits between the two (see below).

  56. 56.

    See Törnberg and Nyström (2009b); and Gøtzsche and Jörgensen (2009b).

  57. 57.

    E.g., Esserman et al. (2009).

  58. 58.

    Törnberg and Nyström (2009a).

  59. 59.

    Swedish Organized Service Screening Evaluation Group (2006).

  60. 60.

    Gøtzsche and Nielsen (2009), p. 2.

  61. 61.

    Duffy et al. (2002), p. 161; and Gøtzsche and Nielsen (2009), pp. 12–14.

  62. 62.

    Newschaffer et al. (2000).

  63. 63.

    See Törnberg and Nyström (2009a, b); and Gøtzsche and Jörgensen (2000a, b).

  64. 64.

    Salwén (2003).

  65. 65.

    Domenighetti et al. (2003).

  66. 66.

    March and Ohlsen (1989).

  67. 67.

    Partly to avoid this, the Cochrane Collaboration has developed an alternative information leaflet to women invited to mammography screening, in which all figures are represented in terms of ratios rather than relative percentage. See http://www.cochrane.dk/screening/mammography-leaflet.pdf.

  68. 68.

    See Törnberg and Nyström (2009a, b); and Gøtzsche and Jörgensen (2009a, b).

  69. 69.

    Again, the are great differences between screening in the US and in Europe seems to be partly due to the differences in health care systems. In the US, screening is driven by the commercial health sector, which, at least partly, likely explains why it was introduced without being officially evaluated first (however, also in the case of the US, PSA investigations amount to screening in the sense defined in Section 1.3). Here different socio-economic structures explain why screening looks like it does, just like in the case of neonatal screening (see Section 3.1.2.3).

  70. 70.

    Ranging from 2.5 till 4 ng/mL, usually with a lower point the younger the screened individuals are (Neal, 2010).

  71. 71.

    Ilic et al. (2008). The review did not target PSA testing exclusively, but also programmes using digital rectal examination.

  72. 72.

    For instance, the Quebec study had very low compliance in the screening group, the Norrköping study reported widely in the media about the study (increasing the likelihood of testing among the control group) and neither study compared outcomes with possible confounders, such as socio-demographic data. Ilic et al. (2008), pp. 11–12.

  73. 73.

    Ilic et al. (2008), p. 2.

  74. 74.

    Schröder et al. (2009).

  75. 75.

    Hoffman (2010).

  76. 76.

    Hugosson et al. (2010).

  77. 77.

    Neal (2010).

  78. 78.

    Smith et al. (1997).

  79. 79.

    Fang et al. (2010). In fact, during the first 3 months after receiving diagnosis, risk of suicide is almost twice as high as in the control group.

  80. 80.

    Hugosson et al. (2010).

  81. 81.

    See Justman (2010) for more references on this.

  82. 82.

    This point is repeatedly made in the literature, but deserves to be mentioned again (Justman, 2010).

  83. 83.

    With a few exceptions, e.g. the decision incompetent. See Beauchamp and Childress (2001), chapter 3.

  84. 84.

    World Medical Association (1964–2008).

  85. 85.

    Hoffman et al. (2010).

  86. 86.

    70.4% for those who reported very good or excellent health and 78.1% for those who reported worse than very good health (Hoffman et al., 2010, p. 1616).

  87. 87.

    U.S. Preventive Services Task Force (2008); see also American Cancer Society Guidelines for the Early Detection of Cancer: http://www.cancer.org/Healthy/FindCancerEarly/CancerScreeningGuidelines/american-cancer-society-guidelines-for-the-early-detection-of-cancer?sitearea=PED

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Authors and Affiliations

  1. Karolinska Institutet Dept. Learning, Informatics, Management & Ethics (LIME), Berzelius väg 3, 171 77, Stockholm, Sweden

    Niklas Juth

  2. Dept. Philosophy, Linguistics & Theory of Science, University of Göteborg, PO Box 200, 405 30, Göteborg, Sweden

    Christian Munthe

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Juth, N., Munthe, C. (2012). Case Studies. In: The Ethics of Screening in Health Care and Medicine. International Library of Ethics, Law, and the New Medicine, vol 51. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-2045-9_5

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