Elisa García1, Danielle R M Timmermans, Evert van Leeuwen. 1. Section of Ethics, Philosophy and the History of Medicine, Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, PO 9101, 6500 HB Nijmegen, The Netherlands. e.garciagonzalez@iq.umcn.nl
Abstract
BACKGROUND: in debates around prenatal screening, it is frequently argued that responsible parenthood implies the acquisition of all available medical information about the health of a fetus, and use of this information to benefit the future child. OBJECTIVE: to analyse whether an offer of a prenatal test leads women to believe that they are morally obliged to control the health of their fetus. DESIGN: a substudy within a randomised controlled trial (RCT) aimed to assess the decision-making process of women when confronted with an offer of a prenatal screening test. PARTICIPANTS: 111 women participating in an RCT were retrospectively asked their views on the meaning of testing within their parental duties. FINDINGS: testing was described as a personal option that goes beyond the normal parental responsibilities. Participants did not believe that they ought to control the health of the fetus or to avoid disability. A duty to test was only reported when the birth of a disabled child would have a negative impact on family life. CONCLUSION: women's accounts suggest that two main factors are involved in making testing morally obligatory: (1) the woman's views on her moral duties to her family; and (2) the expected burden of a disabled child on the well-being of the family. A family-centred approach would be more suitable to assess the moral imperative character of testing than women's ethical views about their moral duties towards their unborn child. IMPLICATIONS: a test offer should not be limited to communication of the characteristics of screening and the meaning of the test results. In helping women to assess the meaning of testing within their parental duties, counselling should include the family situation in which women have to decide, the women's expectations about living with a child with Down's syndrome or any other disability, and the women's views on their commitments towards their family.
RCT Entities:
BACKGROUND: in debates around prenatal screening, it is frequently argued that responsible parenthood implies the acquisition of all available medical information about the health of a fetus, and use of this information to benefit the future child. OBJECTIVE: to analyse whether an offer of a prenatal test leads women to believe that they are morally obliged to control the health of their fetus. DESIGN: a substudy within a randomised controlled trial (RCT) aimed to assess the decision-making process of women when confronted with an offer of a prenatal screening test. PARTICIPANTS: 111 women participating in an RCT were retrospectively asked their views on the meaning of testing within their parental duties. FINDINGS: testing was described as a personal option that goes beyond the normal parental responsibilities. Participants did not believe that they ought to control the health of the fetus or to avoid disability. A duty to test was only reported when the birth of a disabled child would have a negative impact on family life. CONCLUSION:women's accounts suggest that two main factors are involved in making testing morally obligatory: (1) the woman's views on her moral duties to her family; and (2) the expected burden of a disabled child on the well-being of the family. A family-centred approach would be more suitable to assess the moral imperative character of testing than women's ethical views about their moral duties towards their unborn child. IMPLICATIONS: a test offer should not be limited to communication of the characteristics of screening and the meaning of the test results. In helping women to assess the meaning of testing within their parental duties, counselling should include the family situation in which women have to decide, the women's expectations about living with a child with Down's syndrome or any other disability, and the women's views on their commitments towards their family.
Authors: Rachèl V van Schendel; Johanna H Kleinveld; Wybo J Dondorp; Eva Pajkrt; Danielle R M Timmermans; Kim C A Holtkamp; Margreet Karsten; Anne L Vlietstra; Augusta M A Lachmeijer; Lidewij Henneman Journal: Eur J Hum Genet Date: 2014-03-19 Impact factor: 4.246
Authors: Anke J Woudstra; Daniëlle R M Timmermans; Ellen Uiters; Evelien Dekker; Ellen M A Smets; Mirjam P Fransen Journal: Health Expect Date: 2017-12-20 Impact factor: 3.377