Abstract
The subject of the ethics of screening is vast and complex. It gives rise to several layers of issues, from the concrete level of actually conducting a screening programme, via complicated scientific and technical details connected to issues regarding the ethical assessment of risks and the goals of screening, to overarching policy issues regarding the basic criteria for when and which screening programmes should actually be conducted and what room for informed consent they should provide. Nevertheless, some general thematic threads can be discerned through the analyses undertaken in the preceding chapters. First, many of the potential ethical conflicts or underlying value issues brought to the fore by screening programmes connect to the tension between applying a standard health care ethical or a public health ethical perspective on screening. In particular, prenatal screening programmes seem very difficult to justify unless their goals are formulated solely in terms of reducing the incidence of inborn disease in the population, while standard health care ethical requirements of respecting autonomy are discounted. A related example is the question of how to trade off severity and prevalence of the targeted disease when these factors pull in opposite directions. At the same time, the intricate problems surrounding the issue of what should be required by tests and follow-up procedures/treatments give rise to a need for value judgements that seem impossible to import from either of the perspectives in isolation, but rather create a need for mixing the two.
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Notes
- 1.
A good example of a case where both these factors seem to be present in making the programme controversial is ATD screening (see Section 3.3.2).
- 2.
- 3.
Munthe (2008).
- 4.
For a recent discussion related to how different parts of public health differ from each other and interact with differing societal sectors and concerns, see Wilson (2009). For a broad outline of the different ways in which the population-focus of public health may be modelled, see Shickle et al. (2007).
- 5.
- 6.
CIOMS (2002).
- 7.
Friedman Ross (2011).
- 8.
The amount of vertical overlap depends to a great extent on the organisation in different countries of the policy making, the enforcement of regulation of various areas and the implementation of policy in other respects. For instance, while in some countries direct political intervention would be expected in case of some undesirable activities undertaken by an agency or institution (such as a hospital), in other national settings, courts and prosecutors would rather be seen as the principal responders.
- 9.
- 10.
An argument to this effect with particular regard to health care and public health can be found in Coggon (2010).
- 11.
Walzer (1983).
- 12.
Nilsson et al. (2009).
- 13.
See, e.g., Smith Iltis (2001).
- 14.
Rosen (1993).
- 15.
Indeed, one of the classical findings of infectious disease and how to prevent it to spread (Semmelweis’ famous testing of his bacterial infection hypothesis regarding puerperal fever) comes from the field of reproductive care (Hempel, 1967).
- 16.
Munthe (1996).
- 17.
Coutts (1990).
- 18.
Kligman (1998).
- 19.
- 20.
Stein (2010a).
- 21.
Stein (2010b).
- 22.
The Nuffield Council on Bioethics (2010), chapter 9.
- 23.
Walzer (1983).
- 24.
Friedman (1970).
- 25.
The curious reader may inspect these and further ingredients in the marketing of commercial PGD via the information and links provided at the Infertility Resources Website. It may be added that the centres and clinics linked to there are far from the worst examples of aggressive and manipulative marketing in this field.
- 26.
See, for instance, the DnaDirect web portal, and the blatant example of the marketing of genetic testing for melanoma at the Myriad Genetics website.
- 27.
- 28.
- 29.
At least partly, this overly allowing stance may be due to the way that screening programmes are often set up already at the stage of medical research, combined with the fact that most societies have a rather fumbling grip on the step from research to routine health care operations (partly because the last stages of medical research as a rule occur within the structure of clinical health care settings).
- 30.
The criteria are quoted from Wilson and Jungner (1968), pp. 26–27.
- 31.
- 32.
Nordenfelt (2003).
- 33.
The hypothetical example of screening in the case of a serious pandemic where access to vaccines or cures are limited (see Section 2.2.2) does not depart from this example, although, in the worst case, it may be that the only measures available are those that aim at containing the infection at a population level by impeding people from moving about as they wish. In this case, what makes the health problem important is basically its potentially high prevalence and, as much as one would wish for sharper medical tools, temporarily restricting the freedom of movement of people is a biomedically certified way of managing this prevalence.
- 34.
Baily and Murray (2008).
- 35.
Regarding the idea of abortion or counselling as the treatment on offer in the case of prenatal screening, see Section 3.1.1.
- 36.
Justman (2010).
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Juth, N., Munthe, C. (2012). Serving Society or Serving the Patient?. 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_6
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