Literature DB >> 29695408

Ethics of routine: a critical analysis of the concept of 'routinisation' in prenatal screening.

Robert-Jan H Galjaard1, Eline M Bunnik2, Adriana Kater-Kuipers2, Inez D de Beaufort2.   

Abstract

In the debate surrounding the introduction of non-invasive prenatal testing (NIPT) in prenatal screening programmes, the concept of routinisation is often used to refer to concerns and potential negative consequences of the test. A literature analysis shows that routinisation has many different meanings, which can be distinguished in three major versions of the concept. Each of these versions comprises several inter-related fears and concerns regarding prenatal screening and particularly regarding NIPT in three areas: (1) informed choice, (2) freedom to choose and (3) consequences for people with a disability. Three of the strongest arguments raised under the flag of routinisation are assessed for their validity: the threat that NIPT poses to informed choice, the potential increase in uptake of first-trimester prenatal screening and its consequences for social pressure to participate in screening or terminate affected pregnancies, and the negative consequences for disabled people. These routinisation arguments lack empirical or normative ground. However, the results of this analysis do not imply that no attention should be paid to possible problems surrounding the introduction of NIPT. At least two problems remain and should be addressed: there should be an ongoing debate about the requirements of informed choice, particularly related to an expanded scope of prenatal screening. Also, reproductive autonomy can only be achieved when expecting parents' options are variegated, real and valuable, so that they can continue to choose whether or not to screen or to terminate a pregnancy. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Entities:  

Keywords:  autonomy; ethics; genetic screening/testing; informed consent; reproductive medicine

Mesh:

Year:  2018        PMID: 29695408     DOI: 10.1136/medethics-2017-104729

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  9 in total

Review 1.  Societal implications of expanded universal carrier screening: a scoping review.

Authors:  Lieke M van den Heuvel; Nina van den Berg; A Cecile J W Janssens; Erwin Birnie; Lidewij Henneman; Wybo J Dondorp; Mirjam Plantinga; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2022-09-12       Impact factor: 5.351

Review 2.  Incorporating patient perspectives in the development of a core outcome set for reproductive genetic carrier screening: a sequential systematic review.

Authors:  Ebony Richardson; Alison McEwen; Toby Newton-John; Ashley Crook; Chris Jacobs
Journal:  Eur J Hum Genet       Date:  2022-03-28       Impact factor: 5.351

3.  Routinization of prenatal screening with the non-invasive prenatal test: pregnant women's perspectives.

Authors:  Karuna R M van der Meij; Annabel Njio; Linda Martin; Janneke T Gitsels-van der Wal; Mireille N Bekker; Elsbeth H van Vliet-Lachotzki; A Jeanine E M van der Ven; Adriana Kater-Kuipers; Danielle R M Timmermans; Erik A Sistermans; Robert-Jan H Galjaard; Lidewij Henneman
Journal:  Eur J Hum Genet       Date:  2021-08-13       Impact factor: 5.351

4.  Multisite assessment of the impact of a prenatal testing educational App on patient knowledge and preparedness for prenatal testing decision making.

Authors:  Patricia Winters; Kirsten J Curnow; Alexandra Benachi; Maria Mar Gil; Belen Santacruz; Miyuki Nishiyama; Fuyuki Hasegawa; Haruhiko Sago
Journal:  J Community Genet       Date:  2022-06-10

5.  Outcomes of Importance to Patients in Reproductive Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set.

Authors:  Ebony Richardson; Alison McEwen; Toby Newton-John; Ashley Crook; Chris Jacobs
Journal:  J Pers Med       Date:  2022-08-12

6.  Should pregnant women be charged for non-invasive prenatal screening? Implications for reproductive autonomy and equal access.

Authors:  Robert-Jan H Galjaard; Inez D de Beaufort; Eline M Bunnik; Adriana Kater-Kuipers
Journal:  J Med Ethics       Date:  2019-09-16       Impact factor: 2.903

7.  Implementing non-invasive prenatal testing (NIPT) in the Netherlands: An interview study exploring opinions about and experiences with societal pressure, reimbursement, and an expanding scope.

Authors:  Iris M Bakkeren; Adriana Kater-Kuipers; Eline M Bunnik; Attie T J I Go; Aad Tibben; Inez D de Beaufort; Robert-Jan H Galjaard; Sam R Riedijk
Journal:  J Genet Couns       Date:  2019-11-11       Impact factor: 2.537

8.  Is routine prenatal screening and testing fundamentally incompatible with a commitment to reproductive choice? Learning from the historical context.

Authors:  Panagiota Nakou
Journal:  Med Health Care Philos       Date:  2020-10-30

9.  Does non-invasive prenatal testing affect the livebirth prevalence of Down syndrome in the Netherlands? A population-based register study.

Authors:  Maurike de Groot-van der Mooren; Gert de Graaf; Michel E Weijerman; Mariette J V Hoffer; Jeroen Knijnenburg; Anne-Marie M F van der Kevie-Kersemaekers; Angelique J A Kooper; Els Voorhoeve; Birgit Sikkema-Raddatz; Laura J C M van Zutven; Malgorzata Ilona Srebniak; Karin Huijsdens-van Amsterdam; John J M Engelen; Dominique Smeets; Anton H van Kaam; Martina C Cornel
Journal:  Prenat Diagn       Date:  2021-07-01       Impact factor: 3.050

  9 in total

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