Dataset Information

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

ABSTRACT:

Objective

Between 2016 and 2017, a population-based preconception expanded carrier screening (PECS) test was developed in the Netherlands during a pilot study. It was subsequently made possible in mid-2018 for couples to ask to have such a PECS test from specially trained general practitioners (GPs). Research has described GPs as crucial in offering PECS tests, but little is known about the GPs' views on PECS and their experiences of providing this test. This article presents a thematic analysis of the PECS practice from the perspective of GPs and a bioethical discussion of the empirical results.

Design

Empirical bioethics. A thematic analysis of qualitative semi-structured interviews was conducted, and is combined with an ethical/philosophical discussion.

Setting

The Netherlands.

Participants

7 Dutch GPs in the Netherlands, interviewed in 2019-2020.

Results

Two themes were identified in the thematic analysis: 'Choice and its complexity' and 'PECS as prompting existential concerns'. The empirical bioethics discussion showed that the first theme highlights that several areas coshape the complexity of choice on PECS, and the need for shared relational autonomous decision-making on these areas within the couple. The second theme highlights that it is not possible to analyse the existential issues raised by PECS solely on the level of the couple or family. A societal level must be included, since these levels affect each other. We refer to this as 'entangled existential genetics'.

Conclusion

The empirical bioethical analysis leads us to present two practical implications. These are: (1) training of GPs who are to offer PECS should cover shared relational autonomous decision-making within the couple and (2) more attention should be given to existential issues evoked by genetic considerations, also during the education of GPs and in bioethical discussions around PECS.

SUBMITTER: Morberg Jamterud S

PROVIDER: S-EPMC8663082 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature

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Publications

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

Morberg Jämterud Sofia S Snoek Anke A van Langen I M IM Verkerk Marian M Zeiler Kristin K

BMJ open 20211209 12

<h4>Objective</h4>Between 2016 and 2017, a population-based preconception expanded carrier screening (PECS) test was developed in the Netherlands during a pilot study. It was subsequently made possible in mid-2018 for couples to ask to have such a PECS test from specially trained general practitioners (GPs). Research has described GPs as crucial in offering PECS tests, but little is known about the GPs' views on PECS and their experiences of providing this test. This article presents a thematic ...[more]

PMID: 34887284

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Dataset Information

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

Objective

Design

Setting

Participants

Results

Conclusion

Publications

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

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