Evidence map›Paper›PMID 29471711›Full record

Trial reportJournal of empirical research on human research ethics : JERHRE2018

Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Phoebe B Mitchell, Sonja I Ziniel, Sarah K Savage, Kurt D Christensen, Elissa R Weitzman, Robert C Green, Noelle L Huntington, Debra J Mathews, Ingrid A Holm

Abstract readRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Journal of empirical research on human research ethics : JERHRE, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 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

3 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. 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

9 authors.

Phoebe B Mitchell1 Johns Hopkins University, Baltimore, MD, USA.ORCID 0000-0001-7927-2348
Sonja I Ziniel2 Center for Patient Safety and Quality Research, Boston, MA, USA.
Sarah K Savage5 Facial Dysmorphology Analysis, Inc., Boston, MA, USA.
Kurt D Christensen6 Harvard University, Boston, MA, USA.ORCID 0000-0003-4068-776X
Elissa R Weitzman6 Harvard University, Boston, MA, USA.
Robert C Green6 Harvard University, Boston, MA, USA.
Noelle L Huntington6 Harvard University, Boston, MA, USA.
Debra J Mathews1 Johns Hopkins University, Baltimore, MD, USA.
Ingrid A Holm6 Harvard University, Boston, MA, USA.

Funding

Integration of Whole Genome Sequencing into Clinical MedicineU01HG006500 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2012 to 2016
$11.5M
Genome Sequence-Based Screening for Childhood Risk and Newborn IllnessU19HD077671 · NICHD · BRIGHAM AND WOMEN'S HOSPITAL · PI BEGGS, ALAN H., GREEN, ROBERT C. · 2013 to 2018
$6.1M
GENETIC ASSOCIATION WITH LUPUS IN AMERICAN BLACKSR01AR042460 · NIAMS · OKLAHOMA MEDICAL RESEARCH FOUNDATION · PI HARLEY, JOHN BARKER · 1993 to 2009
$5.1M
Better Outcomes for Children: Promoting Excellence in Healthcare Genomics to Inform PolicyU01HG008666 · NHGRI · CINCINNATI CHILDRENS HOSP MED CTR · PI HARLEY, JOHN BARKER · 2015 to 2019
$4.2M
Genetic Linkage in LupusR37AI024717 · NIAID · OKLAHOMA MEDICAL RESEARCH FOUNDATION · PI HARLEY, JOHN BARKER · 2005 to 2014
$4.2M
Better Outcomes for Children: GWAS & PheWAS in eMERGEII.U01HG006828 · NHGRI · CINCINNATI CHILDRENS HOSP MED CTR · PI HARLEY, JOHN BARKER, HOLM, INGRID ADELE · 2012 to 2014
$4.0M
Y RNA SEQUENCES AND RO RNP FUNCTIONR01AI031584 · NIAID · OKLAHOMA MEDICAL RESEARCH FOUNDATION · PI HARLEY, JOHN BARKER · 1991 to 2006
$2.7M
Returning research results in children: Parental Preferences and Expert OversightR01HG006615 · NHGRI · BOSTON CHILDREN'S HOSPITAL · PI HOLM, INGRID ADELE · 2011 to 2013
$361k
Incidental Finding Preferences in Whole Genome Sequencing: A Randomized TrialF32HG006993 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI CHRISTENSEN, KURT DEREK · 2012 to 2013
$102k
NHGRI NIH HHS F32 HG006993NHGRI NIH HHS R01 HG006615NHGRI NIH HHS U01 HG006500NHGRI NIH HHS U01 HG006828NIAID NIH HHS R01 AI031584NIAID NIH HHS R37 AI024717NIAMS NIH HHS R01 AR042460NICHD NIH HHS U19 HD077671
6 · The paper itself

Abstract

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents' preferences and intent to participate (ITP) in biobank research utilizing their child's genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences ( p < .0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

Indexed as

Biological Specimen BanksAdultBiomedical ResearchChildFemaleHumansInformed ConsentMaleParentsPatient PreferencePersonal Satisfactionbioethicsbiorepositories/biobankschildren and adolescent/pediatricsgenetic researchreturn of results

Identifiers

PMID29471711
PMCPMC8793343

What OpenQuestion holds

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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.