Evidence map›Paper›PMID 40176371›Full record

ArticleJournal of genetic counseling2025

Decision stability among adolescents and young adults making choices about learning genomic research results.

Amy A Blumling, Holly Elder, Jessica A Sinclair, Srimayi Mulukutla, Madeline Mahoney, Cynthia A Prows, Melanie F Myers, Michelle L McGowan

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

8 authors.

Amy A BlumlingDivision of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.ORCID 0000-0002-6632-4150
Holly ElderDivision of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.ORCID 0009-0004-3191-0581
Jessica A SinclairBiomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.
Srimayi MulukutlaMedical Sciences Baccalaureate Program, University of Cincinnati, Cincinnati, Ohio, USA.
Madeline MahoneyBiomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.ORCID 0009-0003-3888-4390
Cynthia A ProwsDivision of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.ORCID 0000-0002-6234-4525
Melanie F MyersDivision of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.ORCID 0000-0002-6845-5226
Michelle L McGowanBiomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.ORCID 0000-0002-9040-7562

Funding

Engaging adolescents in decisions about return of genomic research resultsR01HG010166 · NHGRI · CINCINNATI CHILDRENS HOSP MED CTR · PI MCGOWAN, MICHELLE L, MYERS, MELANIE F · 2019 to 2023
$3.6M
NHGRI NIH HHS R01 HG010166
6 · The paper itself

Abstract

With increasing opportunities for minors to undergo genomic testing, factors influencing young people's decision stability and instability regarding genomic testing are unclear. This interpretive description study examines decision stability when adolescents (13-17) and young adults (18-21) decide whether to learn genetic testing results. Adolescents and young adults enrolled in a clinical trial chose whether they wanted to learn genetic testing results and could modify their decisions during a study visit or 2 weeks later. A purposive sample of clinical trial participants was invited to participate in an interview exploring their decision preferences, confidence level, and factors impacting decision stability. Twenty-two participants chose to learn all (n = 7), some (n = 7), or no genetic test results (n = 8). Perceptions of the impact of personal genetic information on one's quality of life and sense of reproductive goals and responsibilities were driving factors for people who chose to learn no or some genetic results, while curiosity influenced those who chose to learn all. Prior health and healthcare experiences and others' influence also factored into decision-making about receiving results. Decision stability varied among individuals but increased over time and was positively influenced by parents, baseline decision confidence, and fear of missing out on the opportunity to learn genetic information. Participants felt favorably about the opportunity to change their decision 2 weeks after the study visit. Among study participants, decision stability was high, as was satisfaction with decisions regarding how much personal genetic information to learn. The results suggest that adolescent and young adult genetic research participants may experience high decision stability and confidence in making choices regarding personal genetic testing, especially when a window of opportunity for change is available. Researchers and clinicians should consider the benefits and challenges of offering multiple checkpoints to bolster decision stability.

Indexed as

Choice BehaviorDecision MakingGenetic TestingAdolescentAdultFemaleHumansMaleYoung Adultadolescentsdecision‐makingpersonal genomic testing

Identifiers

PMID40176371
PMCPMC11970342

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Registered trials

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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.