Evidence map›Paper›PMID 27553645›Full record

ArticlePublic health genomics2016

Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.

Travis Hyams, Deborah J Bowen, Celeste Condit, Jeremy Grossman, Megan Fitzmaurice, Deborah Goodman, Lari Wenzel, Karen L Edwards

Abstract read
In one paragraph

Article in Public health genomics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

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

  1. Pooled it
  2. Pooled it
  3. Review
  4. Review
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.

Travis HyamsInstitute for Public Health Genetics, University of Washington, Seattle, Wash., USA.
Deborah J Bowen
Celeste Condit
Jeremy Grossman
Megan Fitzmaurice
Deborah Goodman
Lari Wenzel
Karen L Edwards

Funding

Identification of Issues and Expectations of Subjects Participating in Genetic StR01CA149051 · NCI · UNIVERSITY OF WASHINGTON · PI EDWARDS, KAREN L · 2011 to 2013
$1.2M
NCI NIH HHS R01 CA149051
6 · The paper itself

Abstract

backgroundThe practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research.

methodsThirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min. Topics explored in this study include which types of genetic test results participants of large biorepositories expect and would like to receive from research analyzing their samples, as well as thoughts on best practice for conducting this type of research.

resultsCancer cases, controls, and first-degree relatives have differing views on what results they would like to receive from biorepository-based research. Participants across all groups attempted to balance the costs and benefits of returning individual research results. DISCUSSION: In the wake of precision medicine, it is important to describe the range of ways participants in large biorepositories both think and talk about the utilization of their specimens for genetics research.

Indexed as

Access to InformationNeoplasmsPrecision MedicineAdultCost-Benefit AnalysisFemaleGenetic ResearchGenetic TestingHumansMaleQualitative ResearchTruth Disclosure

Identifiers

PMID27553645
PMCPMC5053808

What OpenQuestion holds

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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.