Non-invasive prenatal testing (NIPT): does the practice discriminate against persons with disabilities?
Down syndrome
non-invasive prenatal testing (NIPT) discrimination
trisomy 21
Journal
Journal of perinatal medicine
ISSN: 1619-3997
Titre abrégé: J Perinat Med
Pays: Germany
ID NLM: 0361031
Informations de publication
Date de publication:
26 Oct 2021
26 Oct 2021
Historique:
received:
28
04
2021
accepted:
29
04
2021
pubmed:
6
7
2021
medline:
2
2
2022
entrez:
5
7
2021
Statut:
epublish
Résumé
The most well-known goal of non-invasive prenatal testing (NIPT) is still to determine whether or not a fetus has trisomy 21. Since women often terminate the pregnancy upon a positive result, there is concern that the use of NIPT contributes to discrimination against persons with disabilities. If this concern is justified, it could have an impact on the wider social acceptability of existing testing practices and their potential further expansion. This paper demonstrates four different versions of the discrimination worry, indicates how international policy papers have reacted to them, and identifies the ethically most relevant feature of the concern.
Identifiants
pubmed: 34225396
pii: jpm-2021-0211
doi: 10.1515/jpm-2021-0211
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
945-948Informations de copyright
© 2021 Walter de Gruyter GmbH, Berlin/Boston.
Références
German Ethics Council. The future of genetic diagnosis – from research to clinical practice. Opinion. Berlin: German Ethics Council; 2013.
Health Council of the Netherlands. NIPT: dynamics and ethics of prenatal screening. Executive summary. Den Haag: Health Council of the Netherlands; 2013.
National Consultative Ethics Committee for Life Sciences and Health. Ethical issues in connection with the development of foetal genetic testing in maternal blood. Paris: National Consultative Ethics Committee for Life Sciences and Health; 2013.
Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues: a guide to the report. London: Nuffield Council on Bioethics; 2007.
Swedish National Council on Medical Ethics. Prenatal diagnosis: the ethics. 2006. Stockholm: Swedish National Council on Medical Ethics; 2017.
Wertz, DC, Fletcher, JC, Berg, K. Review of ethical issues in medical ethics: report of consultants to WHO. Geneva: World Health Organization; 2003.
UNESCO. Report of the IBC on updating its reflection on the human genome and human rights. Paris: United Nations Educational Scientific and Cultural Organization; 2015.
Dondorp, W, De Wert, G, Bombard, Y, Bianchi, DW, Bergmann, C, Borry, P, et al.. Noninvasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Eur J Hum Genet 2015;23:1438–50. https://doi.org/10.1038/ejhg.2015.57.
Harris, J. Is there a coherent social conception of disability? J Med Ethics 2000;26:95–100. https://doi.org/10.1136/jme.26.2.95.
Glover, J. Choosing children. Genes, disability, and design. Oxford: Oxford University Press; 2006.
Buchanan, A, Brock, DA, Daniels, N, Wikler, D. From chance to choice. Genetics and justice. rev. ed. Cambridge: Cambridge University Press; 2009.
Roizen, NJ, Patterson, D. Down’s syndrome. Lancet 2003;361:1281–9. https://doi.org/10.1016/s0140-6736(03)12987-x.
Swiss National Advisory Commission on Biomedical Ethics. Überlegungen zur ethischen Einschätzung des Nicht-Invasiven Pränatal-Tests (NIPT). Bern: Nationale Ethikkommission im Bereich der Humanmedizin; 2016.
Birnbacher, D. Selektion von Nachkommen. In: Birnbacher, D, editor. Bioethik zwischen Natur und Interesse. Suhrkamp: Frankfurt a. M.; 2006:315–35 pp.
Barter, B, Hastings, RP. Consultation with individuals with down syndrome about non-invasive prenatal testing (NIPT); 2017:51 p. Available from: https://www.nuffieldbioethics.org/assets/pdfs/Barter_report_on_NIPT.pdf.
Merkel, R. Von wegen Selektion. Frankfurter Allgemeine Zeitung; 2019. Available from: https://www.faz.net/aktuell/feuilleton/debatten/diskriminiert-ein-bluttest-embryonen-mit-trisomie-21-16157312.html.