Evidence map›Paper›PMID 29215654›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2018

Age and perceived risks and benefits of preventive genomic screening.

Margaret Waltz, R Jean Cadigan, Anya E R Prince, Debra Skinner, Gail E Henderson

Abstract read
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.

0numbers the graph read from it
0cells of the map it votes in
15citing 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

15 citing papers in PubMed.

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  15. Is Real-Time ELSI Realistic?AJOB empirical bioethics
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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

5 authors.

Margaret WaltzCenter for Genomics and Society, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. margaret_waltz@med.unc.edu.
R Jean CadiganCenter for Genomics and Society, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Anya E R PrinceCenter for Genomics and Society, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Debra SkinnerCenter for Genomics and Society, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Gail E HendersonCenter for Genomics and Society, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.

Funding

Center for Genomics and SocietyP50HG004488 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI HENDERSON, GAIL E · 2007 to 2017
$12.6M
Use of Genetic Information by Life, Long-term Care, and Disability InsurersR00HG008819 · NHGRI · UNIVERSITY OF IOWA · PI PRINCE, ANYA E.R. · 2017 to 2019
$728k
Use of Genetic Information by Life, Long-term Care, and Disability Insurers: Exploring International Lessons, the Domestic Legal Landscape, and Options for U.S. PolicyK99HG008819 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI PRINCE, ANYA E.R. · 2015 to 2016
$182k
NHGRI NIH HHS K99 HG008819NHGRI NIH HHS P50 HG004488NHGRI NIH HHS R00 HG008819
6 · The paper itself

Abstract

purposeAs genome sequencing moves from research to clinical practice, sequencing technologies focused on "medically actionable" targets are being promoted for preventive screening despite the dearth of systematic evidence of risks and benefits and of criteria for selection of screening subjects. This study investigates researchers' and research participants' perceptions of these issues within the context of a preventive genomic screening study, GeneScreen.

methodsWe recorded researcher deliberations regarding age eligibility criteria and the risks and benefits of screening, and conducted interviews with 50 GeneScreen participants about their motivations for joining and their perceptions of risks and benefits.

resultsResearchers made assumptions about who would want and benefit from screening based on age. After discussion, researchers opted not to have an upper age limit for enrollment. Participants of all ages perceived similar benefits, including prevention, treatment, and cascade testing, and similar risks, such as insurance discrimination and worry.

conclusionWhile clinical benefits of preventive genomic screening for older adults are debatable, our respondents perceived a range of benefits of screening in both clinical and research settings. Researchers and clinicians should carefully consider decisions about whether to exclude older adults and whether to provide information about benefits and risks across age groups.

Indexed as

AdolescentAdultAgedAge FactorsAttitude of Health PersonnelDecision MakingFemaleGenetic TestingHealth Knowledge, Attitudes, PracticeHumansMaleMiddle AgedRisk AssessmentRisk FactorsWhole Genome Sequencingagegenomic researchpreventive genomic screeningrisks and benefits

Identifiers

PMID29215654
PMCPMC5991986

What OpenQuestion holds

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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.