Evidence map›Paper›PMID 37275350›Full record

ArticleCitizen science : theory and practice2022

An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.

Christi J Guerrini, Amy L McGuire

Abstract read
In one paragraph

Article in Citizen science : theory and practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

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

4 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. 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

2 authors.

Christi J GuerriniBaylor College of Medicine, US.ORCID 0000-0003-4430-2740
Amy L McGuireBaylor College of Medicine, US.ORCID 0000-0002-7819-519X

Funding

Ownership Interests in Research Outputs of Genomic Citizen Science InitiativesK01HG009355 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI GUERRINI, CHRISTI · 2016 to 2019
$664k
NHGRI NIH HHS K01 HG009355
6 · The paper itself

Abstract

The collaborative nature of citizen science raises important questions about managing ownership of its research outputs. Potential citizen science research outputs include data sets, findings, publications, and discoveries of new ideas, methods, products, and technologies. Unlike citizen science projects conducted in other disciplines, biomedical citizen science projects often include features, such as contribution of personal health data, that might heighten citizen scientists' expectations that they will be able to access, control, or share in the benefits of project outputs. Here, we refer to moral claims of access, control, and benefit as ownership claims, and a project's management of ownership claims as its ownership practices. Ethical management of ownership is widely recognized as an important consideration for citizen science projects, and practitioners and scholars have described helpful recommendations for preempting issues and engaging stakeholders on practices. Building on this literature, we propose a framework to help biomedical citizen science projects systematically evaluate the ethical soundness of their ownership practices based on four considerations: reciprocal treatment, relative treatment, risk-benefit assessment, and reasonable expectations.

Indexed as

biomedicalCommon RuleethicshealthIRBOwnership

Identifiers

PMID37275350
PMCPMC10237586

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.