Evidence map›Paper›PMID 42223556›Full record

ArticleJournal of bioethical inquiry2026

Information, Access, and Stress: Ethical Insights From Parents' Views on Autonomy in Expanded Prenatal Testing.

Jackie Leach Scully, Jan Hodgson, Rosalind McDougall, Leila Thy Kint, Isabella Holmes, Kitty-Jean Laginha, Ainsley J Newson

Abstract read
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In one paragraph

Article in Journal of bioethical inquiry, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Jackie Leach ScullyDisability Innovation Institute UNSW, Sydney, NSW, 2052, Australia.
Jan HodgsonDepartment of Paediatrics, Melbourne Medical School, The University of Melbourne, Melbourne, VIC, 3052, Australia.
Rosalind McDougallMelbourne School of Population and Global Health, Centre for Health Equity, The University of Melbourne, Melbourne, VIC, 3052, Australia.
Leila Thy KintSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, 2006, Australia.
Isabella HolmesSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, 2006, Australia.
Kitty-Jean LaginhaSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, 2006, Australia.
Ainsley J NewsonSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, 2006, Australia. ainsley.newson@sydney.edu.au.

Funding

Australian Research Council DP200100006
6 · The paper itself

Abstract

This study explores parents' perspectives on expanded genomic testing in pregnancy and its implications for reproductive autonomy. We conducted four workshops using dialogue group methodology and involving thirty-three Australian parents with recent experience of pregnancy. Participants used a fictional scenario involving prenatal testing to reflect on their own experiences and views. Four interconnected themes were identified: barriers to autonomous testing and choice, the need for guidance and support through the decision-making process, the impact of stress and social expectations on reproductive autonomy, and the importance of information to reproductive autonomy. Participants valued genomic information to help in decision-making and to give reassurance but struggled to comprehend the nature of the information that expanded testing could provide. They relied on trusted healthcare professionals to interpret the meaning of test results but recognized the reality of constraints on healthcare resources. Our findings show that reproductive autonomy in this context is both individual and relational and requires health systems that support values-based decision-making. In an era of expanding prenatal genomic testing, our study highlights the need for a framework for reproductive autonomy that goes beyond information provision, to provide the conditions necessary for genuinely autonomous decision-making.

Indexed as

BioethicsEthicsGenetic testingNon-invasive prenatal testingPrenatal diagnosis

Identifiers

PMID42223556

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.