Evidence map›Paper›PMID 39250773›Full record

ArticleAJOB empirical bioethics

Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking.

R Jean Cadigan, Roselle Ponsaran, Carla Rich, Josie Timmons, Kyle B Brothers, Aaron J Goldenberg

Abstract read
In one paragraph

Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
  2. Article
  3. 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

6 authors.

R Jean CadiganDepartment of Social Medicine, University of North Carolina Chapel Hill School of Medicine, Chapel Hill, North Carolina, USA.ORCID 0000-0002-6793-2174
Roselle PonsaranDepartment of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.
Carla RichNorton Children's Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, Kentucky, USA.
Josie TimmonsNorton Children's Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, Kentucky, USA.
Kyle B BrothersNorton Children's Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, Kentucky, USA.ORCID 0000-0002-8550-9724
Aaron J GoldenbergDepartment of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.

Funding

Addressing Ethical Challenges in Networked BiorepositoriesR01HG008988 · NHGRI · UNIVERSITY OF LOUISVILLE · PI BROTHERS, KYLE BERTRAM, GOLDENBERG, AARON J · 2016 to 2019
$1.7M
NHGRI NIH HHS R01 HG008988
6 · The paper itself

Abstract

backgroundThe literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal.

methodsAs part of a larger study on the ethical, legal, and social implications (ELSI) of networked biobanking, we conducted 38 interviews with representatives of 31 networked biobanks. Interviews explored operations of the networks. We used thematic analysis to examine how respondents describe three topics associated with stewarding biobank resources-funding, utilization, and sustainability.

resultsOur results highlight that funding, utilization, and sustainability are critical not only to the operation of biobanks, but also to the ethical obligations that biobankers owe to stakeholders to steward the resources. Based on prior research, we hypothesized that respondents would describe networking as beneficial to increasing funding, utilization, and sustainability of the network. Respondents generally found value in networked biobanking, but networking did not necessarily increase funding, utilization, and sustainability.

conclusionThe results presented here support inclusion of funding, utilization, and sustainability as topics of ethical concern in the practice of biobanking and networked biobanking. These issues are rooted in the stewardship obligations that biobankers feel to their partners, client investigators, and participants. The goal of promoting stewardship through networking requires significant time and effort to build governance models that honor the obligations of each individual biobank to their donors and advance the collective goals of the network. We conclude with suggestions offered by respondents to address improving these aspects of stewardship.

Indexed as

Biological Specimen BanksBiomedical ResearchHumansbiobankbiorepositoryinterviewsResearch ethicsstewardshipsustainability

Identifiers

PMID39250773
PMCPMC11785498

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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.