Evidence map›Paper›PMID 40245273›Full record

ArticleThe Hastings Center report2025

Rethinking the Burden of Traditional Informed Consent Prior to Prenatal Genetic Screening.

Megan Allyse, Kirsten Riggan, Natasha Bonhomme, Marsha Michie

Registry-linked trialAbstract read
In one paragraph

Article in The Hastings Center report, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07557303 (Supporting Just-In-Time Consent for Prenatal Screening), which is not on this 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.

NCT07557303 nanot yet recruitingnot on this mapstarted 2026, after this paper: background citation

Supporting Just-In-Time Consent for Prenatal Screening: The INFORM Study

TypeinterventionalSponsorCase Western Reserve UniversityRan2026 to 2028Enrolled1,400ConditionsDelivery of Health Care, Genetic Testing, Humans, PregnancyArmsMobile-based Educational Intervention
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

4 authors.

Megan Allyse
Kirsten Riggan
Natasha Bonhomme
Marsha Michie

Funding

Prenatal Preparation: Actions and ResultsR01HG009668 · NHGRI · CASE WESTERN RESERVE UNIVERSITY · PI MICHIE, MARSHA MABRY · 2019 to 2022
$3.0M
Supporting Just-in-Time Consent for Prenatal Screening in Diverse PopulationsR01HG013718 · NHGRI · MAYO CLINIC JACKSONVILLE · PI Megan A. Allyse, Marsha Mabry Michie · 2024 to 2026
$2.4M
Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved PopulationsK01HG009542 · NHGRI · MAYO CLINIC ROCHESTER · PI ALLYSE, MEGAN A. · 2018 to 2022
$809k
NHGRI NIH HHS K01 HG009542NHGRI NIH HHS R01 HG009668NHGRI NIH HHS R01 HG013718NHGRI NIH HHS R01HG013718
6 · The paper itself

Abstract

The ethics literature and professional guidelines call for extensive discussions prior to prescreening consent to prenatal cell-free DNA screening to, theoretically, allow patients to make decisions that match their values and goals of care. Most patients, however, actively avoid in-depth moral deliberation when consenting to prenatal screening and then receive a screen-negative result, suggesting that an information-heavy process is irrelevant for average-risk pregnancies. In addition, extensive information-based consent procedures are not feasible in many resource-limited contexts. Meanwhile, patients and families with screen-positive results frequently report minimal support following screening, resulting in long-term distress and suboptimal outcomes. We argue for a fundamental shift to an approach we call "just-in-time consent": identifying the essential information for values-based decisions prior to screening while relocating resources and moral deliberation to when families receive screen-positive results. This model both ensures that patients and families receive support when they most need it and maintains high standards for the ethical provision of prenatal genetic screening.

Indexed as

Genetic TestingInformed ConsentPrenatal DiagnosisDecision MakingFemaleHumansPregnancyclinical ethicsinformed consentpatient supportprenatal careprenatal genetic screeningshared decision‐making

Identifiers

PMID40245273
PMCPMC12279024

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Registered trials

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.