Abstract
Analyzing arguments in decisions about PND shows that the ethical concern of health care professionals differs considerably from the ethical concerns of pregnant women. Health care professionals are more concerned with the right interpretation of medical facts and the application of established principles of counselling. Pregnant women on the contrary focus on broader life circumstances, relations in the family and their own emotions. Both ethical perspectives are limited but can usefully complement each other. However, in certain cases there can be conflicts between them. In these cases it is not enough to refer to scientific authorities, the principle of non-directiveness or to the principle of autonomy of the pregnant women. Ethically sound solutions have to integrate both perspectives and evaluate all facts even at the costs of some less central goals of PND.
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Notes
- 1.
- 2.
The inventor of the concept in genetic counselling, the American geneticist Sheldon Reed refers to the findings of Carl Rogers who elaborated effective methods for a client centred therapy and analysed the relationship between counsellors and counselees in psychotherapy (Rogers 1942; cf. Porter 1977).
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- 5.
Many couples tend to have high expectations towards the validity of prenatal tests although some of them have a considerable amount of false positive results. Invasive genetic tests like amniocentesis gives almost perfect certainty. Conspicuous ultrasound screening results can usually be clarified by further invasive tests.
- 6.
Slovic et al. called this phenomenon of lower perceived risks of not nominated risks “out of sight out of mind” (Slovic 1982, p. 470 f.).
- 7.
Malenka et al. presented the benefits of one single medication to patients in two different ways: in relative terms and in absolute terms. “56.8% of patients chose the medication whose benefit was in relative terms. 14.7% chose the medication whose benefit was in absolute terms” (Malenka et al. 1993).
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Available experiences have a great influence on the heuristic in which a person evaluates the frequency or the severity of the diagnosis (cf. Tversky and Kahneman 1973). Leuzinger-Bohleber et al. present the psychological complexity of a case where the decision to terminate the pregnancy is based on an inaccurate perception of the severity of a genetic disorder the pregnant women experienced in her family (Leuzinger-Bohleber et al. 2008a, pp. 188–195).
- 9.
E.g. Familial Adenomatous Polyposis is a hereditary genetic disorder leading to colon cancer but now there is a possibility of prevention. So having a genetic disorder could be uncoupled from symptoms.
- 10.
Wieser emphasizes the goal-oriented role of technology in PND. Following the sociologist Bruno Latour he compares PND with the speed bump in the traffic: By staying there and doing nothing the speed bump is influencing the behavior of car drivers (speed reduction) and is functioning as part of an action programme. Prenatal test results similarly do nothing but are just there and also function as a certain action programme (Wieser 2006, pp. 118–119).
- 11.
See results in Leuzinger-Bohleber et al. (Eds.) 2008b.
- 12.
The following findings are results from the German part of the EDIG survey, i.e. answers from German pregnant women to open questions in an extensive questionnaire about psychological and ethical issues. Results from a quantitative analysis see also in Leuzinger-Bohleber et al. (Eds.) 2008b, in particular in Fischmann et al. 2008.
- 13.
The ideal of an independent individual has been criticised by several feminist ethicist, e.g. Corandi (2001).
- 14.
The first question was: “Have you talked to anyone about what you would do if an abnormality was detected?” followed by the open question: “What did you talk about?” This question asked the “about” and not the “why”, still a high number of pregnant women presented moral justifications for their decision.
- 15.
Because in the questionnaire it was not explicitly asked for a motivation the proportions do not present reliable quantitative data, but the qualitative nature of the answers is given. A quantitative study form the Netherlands aimed to demonstrate motivations for termination of pregnancy in case of Down syndrome showed similar results: 73% of mothers considered the burden too heavy for other children of the family and 64% considered this burden too heavy for themselves. This study also reports a higher proportion of pregnant women who consider the burden of the disorder for the future child too severe (45–92%) (Korenromp et al. 2007, p. 149.e3).
- 16.
The following findings are results from the German part of the EDIG survey, i.e. answers from German pregnant women to open questions in an extensive questionnaire about psychological and ethical issues. Results from a quantitative analysis see also Leuzinger-Bohleber et al. (Eds.) 2008b, in particular Fischmann et al. 2008.
- 17.
The case was presented in one of the detailed EDIG-interviews in Leuzinger-Bohleber et al. (Eds.) 2008b, pp. 188–195.
- 18.
Conditions amenable to prenatal treatment of the fetus have to be treated differently.
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Kovács, L. (2011). Taking Risk in Striving for Certainty. Discrepancies in the Moral Deliberations of Counsellors and Pregnant Women Undergoing PND. In: Fischmann, T., Hildt, E. (eds) Ethical Dilemmas in Prenatal Diagnosis. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-1396-3_9
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