Evidence map›Paper›PMID 25742665›Full record

ArticleJournal of empirical research on human research ethics : JERHRE2015

The MICHR Genomic DNA BioLibrary: An Empirical Study of the Ethics of Biorepository Development.

Blake J Roessler, Nicholas H Steneck, Lisa Connally

Abstract read
In one paragraph

Article in Journal of empirical research on human research ethics : JERHRE, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. Optimizing Enrollment of Patients into Nephrology Research Studies.Clinical journal of the American Society of Nephrology : CJASN · 2016
    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

3 authors.

Blake J RoesslerMichigan Institute for Clinical and Health Research (MICHR), University of Michigan Medical School, Ann Arbor, Michigan, USA Division of Rheumatology, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Nicholas H SteneckMichigan Institute for Clinical and Health Research (MICHR), University of Michigan Medical School, Ann Arbor, Michigan, USA Department of History, College of Literature, Science and the Arts, University of Michigan, Ann Arbor, Michigan, USA nsteneck@umich.edu.
Lisa ConnallyMichigan Institute for Clinical and Health Research (MICHR), University of Michigan Medical School, Ann Arbor, Michigan, USA.

Funding

MICHIGAN INSTITUTE FOR CLINICAL AND HEALTH RESEARCH (MICHR) (UL1): (BPCA)UL1RR024986 · NCRR · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SHANLEY, THOMAS P. · 2007 to 2011
$51.2M
NCRR NIH HHS 3-ULI-RR-024986-04S1NCRR NIH HHS UL1 RR024986
6 · The paper itself

Abstract

In this article, we report on an effort to study the development and usefulness of a large, broad-use, opt-in biorepository for genomic research, focusing on three ethical issues: providing appropriate understanding, recruiting in ways that do not comprise autonomous decisions, and assessing costs versus benefits. We conclude the following: (a) Understanding can be improved by separating the task of informing subjects from documenting informed consent (Common Rule) and permission to use personal health information and samples for research (Health Insurance Portability and Accountability Act [HIPAA]); however, regulations might have to be changed to accommodate this approach. (b) Changing recruiting methods increases efficiency but can interfere with subject autonomy. (c) Finally, we propose a framework for the objective evaluation of the utility of biorepositories and suggest that more attention needs to be paid to use and sustainability.

Indexed as

Patient SelectionResearch SubjectsBiological Specimen BanksBiomedical ResearchComprehensionConsent FormsCost-Benefit AnalysisDNAGenomeGenomicsHealth Insurance Portability and Accountability ActHealth Records, PersonalHumansInformed ConsentPersonal AutonomyUnited StatesDNAautonomybiobankbiorepositorycost–benefit analysisethicsgenomic researchinformed consentunderstanding

Identifiers

PMID25742665
PMCPMC4382351

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.