Evidence map›Paper›PMID 42647252›Full record

ArticleInternational journal of neonatal screening2026

Optimizing Informed Consent for Australian Newborn Bloodspot Screening and Research: Consensus Workshop Insights and Recommendations.

Carolyn Mazariego, Mahitha Ramanathan, Deborah A Johnston, Zhicheng Li, Brittany C McGill, Marina Okamura, Lauren Kelada, Ilona Juraskova, Claire E Wakefield, Natalie Taylor

Abstract read
In one paragraph

Article in International journal of neonatal screening, 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

10 authors.

Carolyn MazariegoImplementation to Impact (i2i), School of Population Health, Faculty of Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0003-3965-4960
Mahitha RamanathanImplementation to Impact (i2i), School of Population Health, Faculty of Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0009-0004-5810-7342
Deborah A JohnstonImplementation to Impact (i2i), School of Population Health, Faculty of Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0001-7226-8346
Zhicheng LiImplementation to Impact (i2i), School of Population Health, Faculty of Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0002-0555-7225
Brittany C McGillBehavioural Sciences Unit, School of Clinical Medicine, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0002-2134-2988
Marina OkamuraSchool of Psychology, The University of Sydney, Sydney, NSW 2006, Australia.ORCID 0009-0003-9872-4292
Lauren KeladaBehavioural Sciences Unit, School of Clinical Medicine, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.
Ilona JuraskovaSchool of Psychology, The University of Sydney, Sydney, NSW 2006, Australia.ORCID 0000-0001-9396-4113
Claire E WakefieldBehavioural Sciences Unit, School of Clinical Medicine, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0001-7704-7067
Natalie TaylorImplementation to Impact (i2i), School of Population Health, Faculty of Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.ORCID 0000-0002-0280-0883

Funding

National Health and Medical Research Council 2022871
6 · The paper itself

Abstract

Informed consent is fundamental to Australian newborn bloodspot screening (NBS), but emerging genomic screening technologies pose new challenges to clinical care and research. Optimizing consent processes is necessary to support ethical practice and maintain public trust as NBS evolves. This study aimed to identify gaps and opportunities to improve NBS consent processes in Queensland, Australia, while also exploring preliminary insights into the evolving complexity of consent in the context of genomic NBS (gNBS) and NBS-related research. A qualitative study design was used, with two facilitated interest-holder workshops (a total of 12 h) involving 86 participants (healthcare professionals, policy-makers, researchers, genomics experts, and consumer representatives). Workshop 1 (

Indexed as

genomic newborn screeninggenomic testinginformed consentnewborn screeningqualitative research

Identifiers

PMID42647252
PMCPMC13510761

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.