Evidence map›Paper›PMID 41089267›Full record

ArticleGenetics in medicine open2025

How does personal utility depend on clinical setting? Evidence from 3 cohorts.

Elise Poole, Stephanie Luca, Daniel Assamad, Bowen Xiao, Joyce Yan, Yue Yin Xia, Lesleigh S Abbott, Linlea Armstrong, Patricia Birch, Kym M Boycott and 19 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genetics in medicine open, 2025. 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

29 authors.

Elise PooleChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Stephanie LucaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Daniel AssamadChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Bowen XiaoChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Joyce YanChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Yue Yin XiaDepartment of Molecular Genetics, University of Toronto, Toronto, ON, Canada.
Lesleigh S AbbottDivision of Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Linlea ArmstrongBritish Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
Patricia BirchBritish Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
Kym M BoycottDepartment of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
June C CarrollDepartment of Family and Community Medicine, Sinai Health, University of Toronto, Toronto, ON, Canada.
Lauren ChadDivision of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.
David ChitayatDepartment of Molecular Genetics, University of Toronto, Toronto, ON, Canada.
Avram DenburgChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Rebecca J DeyellBritish Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
Alison M ElliottBritish Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
Catherine GoudieDepartment of Pediatrics, Division of Hematology-Oncology, McGill University Health Centre, Montreal, QC, Canada.
Anne-Marie LabergeDivision of Medical Genetics, Centre Hospitalier Universitaire Sainte-Justine, Montreal, QC, Canada.
Melissa MaioMackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada.
Iskra T PeltekovaDepartment of Pediatrics, University of Toronto, Toronto, ON, Canada.
Becky QuinlanPatient Partner, Ontario Genetics Advisory Committee, Ontario Health.
Sarah L SawyerDepartment of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Rachel SilverThe Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, ON, Canada.
Maureen SmithPatient Partner, Canadian Organization for Rare Disorders.
Ronni TeitelbaumMackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada.
Anita VillaniDepartment of Pediatrics, University of Toronto, Toronto, ON, Canada.
Wendy J UngarChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Robin Z HayeemsChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
P-GUIDE Study Team

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Purpose: Evidence of personal utility of genetic testing is critical to clinical care, funding, and policy decisions. We aimed to understand how patient-oriented values and preferences for genetic testing vary across clinical settings to inform the development of a personal utility index. Methods: Participants were recruited from 3 clinical settings: pediatric clinical genetics, pediatric oncology, and prenatal care. For each cohort, a preliminary set of domains and elements of utility were generated from the literature. Semi-structured interviews were conducted with parents to understand the meaning of personal utility and relevance of preliminary domains and elements. Deductive coding identified shared and unique elements of utility across cohorts. Results: A total of 63 parents were interviewed. Personal utility domains that resonated with participants included cognitive, medical management, affective, behavioral, and social. Common elements included increased understanding about the cause of their child's condition and contributing to scientific knowledge. Unique elements were identified in each cohort: identifying support services in clinical genetics, understanding cancer risks in oncology, and pregnancy decision making in prenatal care. Conclusion: We identified shared and unique elements of personal utility across cohorts from 3 clinical settings, suggesting the need to tailor utility assessment to the clinical setting and patient population.

Indexed as

Clinical geneticsGenetic testingOncologyPersonal utilityPrenatal care

Identifiers

PMID41089267
PMCPMC12516041

What OpenQuestion holds

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LicenceCC BY-NC-ND
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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.