Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals
Abstract Background The introduction of non-invasive prenatal testing (NIPT) for foetal aneuploidies is currently changing the field of prenatal screening in many countries. As it is non-invasive, safe and accurate, this technique allows for a broad implementation of first-trimester prenatal screeni...
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| Format: | Article |
| Language: | English |
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BMC
2018-10-01
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| Series: | BMC Pregnancy and Childbirth |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12884-018-2050-4 |
| _version_ | 1819048040490598400 |
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| author | A. Kater-Kuipers E. M. Bunnik I. D. de Beaufort R. J. H. Galjaard |
| author_facet | A. Kater-Kuipers E. M. Bunnik I. D. de Beaufort R. J. H. Galjaard |
| author_sort | A. Kater-Kuipers |
| collection | DOAJ |
| description | Abstract Background The introduction of non-invasive prenatal testing (NIPT) for foetal aneuploidies is currently changing the field of prenatal screening in many countries. As it is non-invasive, safe and accurate, this technique allows for a broad implementation of first-trimester prenatal screening, which raises ethical issues, related, for instance, to informed choice and adverse societal consequences. This article offers an account of a leading international ethical framework for prenatal screening, examines how this framework is used by professionals working in the field of NIPT, and presents ethical guidance for the expansion of the scope of prenatal screening in practice. Methods A comparative analysis of authoritative documents is combined with 15 semi-structured interviews with professionals in the field of prenatal screening in the Netherlands. Data were recorded, transcribed verbatim and analysed using thematic analysis. Results The current ethical framework consists of four pillars: the aim of screening, the proportionality of the test, justice, and societal aspects. Respondents recognised and supported this framework in practice, but expressed some concerns. Professionals felt that pregnant women do not always make informed choices, while this is seen as central to reproductive autonomy (the aim of screening), and that pre-test counselling practices stand in need of improvement. Respondents believed that the benefits of NIPT, and of an expansion of its scope, outweigh the harms (proportionality), which are thought to be acceptable. They felt that the out-of-pocket financial contribution currently required by pregnant women constitutes a barrier to access to NIPT, which disproportionally affects those of a lower socioeconomic status (justice). Finally, professionals recognised but did not share concerns about a rising pressure to test or discrimination of disabled persons (societal aspects). Conclusions Four types of limits to the scope of NIPT are proposed: NIPT should generate only test outcomes that are relevant to reproductive decision-making, informed choice should be (made) possible through adequate pre-test counselling, the rights of future children should be respected, and equal access should be guaranteed. Although the focus of the interview study is on the Dutch healthcare setting, insights and conclusions can be applied internationally and to other healthcare systems. |
| first_indexed | 2024-12-21T11:09:56Z |
| format | Article |
| id | doaj.art-df398b2a42484e30883c468ce8a57708 |
| institution | Directory Open Access Journal |
| issn | 1471-2393 |
| language | English |
| last_indexed | 2024-12-21T11:09:56Z |
| publishDate | 2018-10-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pregnancy and Childbirth |
| spelling | doaj.art-df398b2a42484e30883c468ce8a577082022-12-21T19:06:07ZengBMCBMC Pregnancy and Childbirth1471-23932018-10-0118111410.1186/s12884-018-2050-4Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionalsA. Kater-Kuipers0E. M. Bunnik1I. D. de Beaufort2R. J. H. Galjaard3Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre RotterdamDepartment of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre RotterdamDepartment of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre RotterdamDepartment of Clinical Genetics, Erasmus MC, University Medical Centre RotterdamAbstract Background The introduction of non-invasive prenatal testing (NIPT) for foetal aneuploidies is currently changing the field of prenatal screening in many countries. As it is non-invasive, safe and accurate, this technique allows for a broad implementation of first-trimester prenatal screening, which raises ethical issues, related, for instance, to informed choice and adverse societal consequences. This article offers an account of a leading international ethical framework for prenatal screening, examines how this framework is used by professionals working in the field of NIPT, and presents ethical guidance for the expansion of the scope of prenatal screening in practice. Methods A comparative analysis of authoritative documents is combined with 15 semi-structured interviews with professionals in the field of prenatal screening in the Netherlands. Data were recorded, transcribed verbatim and analysed using thematic analysis. Results The current ethical framework consists of four pillars: the aim of screening, the proportionality of the test, justice, and societal aspects. Respondents recognised and supported this framework in practice, but expressed some concerns. Professionals felt that pregnant women do not always make informed choices, while this is seen as central to reproductive autonomy (the aim of screening), and that pre-test counselling practices stand in need of improvement. Respondents believed that the benefits of NIPT, and of an expansion of its scope, outweigh the harms (proportionality), which are thought to be acceptable. They felt that the out-of-pocket financial contribution currently required by pregnant women constitutes a barrier to access to NIPT, which disproportionally affects those of a lower socioeconomic status (justice). Finally, professionals recognised but did not share concerns about a rising pressure to test or discrimination of disabled persons (societal aspects). Conclusions Four types of limits to the scope of NIPT are proposed: NIPT should generate only test outcomes that are relevant to reproductive decision-making, informed choice should be (made) possible through adequate pre-test counselling, the rights of future children should be respected, and equal access should be guaranteed. Although the focus of the interview study is on the Dutch healthcare setting, insights and conclusions can be applied internationally and to other healthcare systems.http://link.springer.com/article/10.1186/s12884-018-2050-4Prenatal screeningNon-invasive prenatal testing (NIPT)Reproductive autonomyInformed consentPublic health ethicsEthical framework |
| spellingShingle | A. Kater-Kuipers E. M. Bunnik I. D. de Beaufort R. J. H. Galjaard Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals BMC Pregnancy and Childbirth Prenatal screening Non-invasive prenatal testing (NIPT) Reproductive autonomy Informed consent Public health ethics Ethical framework |
| title | Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals |
| title_full | Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals |
| title_fullStr | Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals |
| title_full_unstemmed | Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals |
| title_short | Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals |
| title_sort | limits to the scope of non invasive prenatal testing nipt an analysis of the international ethical framework for prenatal screening and an interview study with dutch professionals |
| topic | Prenatal screening Non-invasive prenatal testing (NIPT) Reproductive autonomy Informed consent Public health ethics Ethical framework |
| url | http://link.springer.com/article/10.1186/s12884-018-2050-4 |
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