Evidence map›Paper›PMID 25871653›Full record

ArticleClinical genetics2016

Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.

K A Kaphingst, J Ivanovich, B B Biesecker, R Dresser, J Seo, L G Dressler, P J Goodfellow, M S Goodman

Abstract read
In one paragraph

Article in Clinical genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
36citing papers in PubMed, 2 pooled it
–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

36 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  14. Ethical concerns relating to genetic risk scores for suicide.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2021
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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.

K A KaphingstDepartment of Communication, University of Utah, Salt Lake City, UT, USA.
J IvanovichDivision of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.
B B BieseckerSocial and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD, USA.
R DresserSchool of Law, Washington University, St. Louis, MO, USA.
J SeoDivision of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.
L G DresslerMission HealthCare, Asheville, NC, USA.
P J GoodfellowCollege of Medicine, Ohio State University, Columbus, OH, USA.
M S GoodmanDivision of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.

Funding

Predictive Modeling & Optimal Control Framework for Model-Based Epidemic Response in DelawareP20GM103446 · NIGMS · UNIVERSITY OF DELAWARE · PI Shawn W Polson · 2012 to 2026
$67.2M
Interventions in Genetic CounselingZIAHG200317 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BIESECKER, BARBARA BOWLES · 2009 to 2018
$7.6M
COMMUNICATION PREFERENCES FOR GENOME SEQUENCING RESULTS IN BREAST CANCER PATIENTSR01CA168608 · NCI · WASHINGTON UNIVERSITY · PI GOODMAN, MELODY S, KAPHINGST, KIMBERLY A · 2012 to 2014
$826k
Intramural NIH HHSNCI NIH HHS R01 CA168608NIGMS NIH HHS P20GM103446
6 · The paper itself

Abstract

While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi-structured, in-person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.

Indexed as

Incidental FindingsSequence Analysis, DNASurveys and QuestionnairesAdultBreast NeoplasmsFemaleGenetic TestingGenome, HumanHumansMiddle Agedbreast cancergenome sequencingincidental findingspatient preferencesreturn of results

Identifiers

PMID25871653
PMCPMC4856148

What OpenQuestion holds

Textmetadata
LicenceTDM
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.