Evidence map›Paper›PMID 39435922›Full record

ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2024

"A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing.

Kayte Spector-Bagdady, Kerry A Ryan, Amy L McGuire, Chris D Krenz, M Grace Trinidad, Kaitlyn Jaffe, Amanda Greene, J Denard Thomas, Madison Kent, Stephanie Morain and 2 more

Abstract readHistorical Article
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2024. 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. Article
  2. 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

12 authors.

Kayte Spector-BagdadyUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.ORCID 0000-0002-5851-6224
Kerry A RyanUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.
Amy L McGuireBAYLOR COLLEGE OF MEDICINE, HOUSTON, TEXAS, USA.
Chris D KrenzBOSTON UNIVERSITY, BOSTON, MASSACHUSETTS, USA.
M Grace TrinidadIMAGING DATA COMMONS, NEEDHAM, MA, USA.
Kaitlyn JaffeUNIVERSITY OF MASSACHUSETTS AMHERST, AMHERST, MASSACHUSETTS, USA.
Amanda GreeneUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.
J Denard ThomasUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.
Madison KentUNIVERSITY OF CALIFORNIA, LOS ANGELES, LOS ANGELES, CALIFORNIA, USA.
Stephanie MorainJOHNS HOPKINS UNIVERSITY, BALTIMORE, MARYLAND, USA.
David WilbornUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.
J Scott RobertsUNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.

Funding

Michigan Institute for Clinical and Health Research (MICHR)UL1TR002240 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI LUMENG, JULIE C, MASHOUR, GEORGE ALEXANDER · 2017 to 2022
$54.9M
The Sulston Project: making the knowledge commons for interpreting cancer genomic variants more effectiveR01CA237118 · NCI · ARIZONA STATE UNIVERSITY-TEMPE CAMPUS · PI COOK-DEEGAN, ROBERT MULLAN, MCGUIRE, AMY L · 2019 to 2022
$2.4M
Hospitals Sharing Patient Data and Biospecimens with Commercial Entities: Evidence-Based Translation to Improved PracticeR01TR004244 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SPECTOR-BAGDADY, KAYTE KELLEHER · 2022 to 2025
$1.9M
BRAINShare: Sharing Data in BRAIN Initiative StudiesR01MH126937 · NIMH · BAYLOR COLLEGE OF MEDICINE · PI MCGUIRE, AMY L, SHETH, SAMEER ANIL · 2021 to 2024
$1.8M
University of Michigan Training Program in ELSI ResearchT32HG010030 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ROBERTS, SCOTT · 2018 to 2022
$962k
Genetic data partnerships: Enabling equitable access within academic/private data sharing agreementsK01HG010496 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SPECTOR-BAGDADY, KAYTE KELLEHER · 2019 to 2023
$875k
NCATS NIH HHS R01 TR004244NCATS NIH HHS UL1 TR002240NCI NIH HHS R01 CA237118NHGRI NIH HHS K01 HG010496NHGRI NIH HHS T32 HG010030NIMH NIH HHS R01 MH126937
6 · The paper itself

Abstract

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.

Indexed as

Genetic ResearchInformation DisseminationGenomicsHumansResearch PersonnelUnited StatesData SharingGeneticsGenetic TestingNational Institutes Of Health

Identifiers

PMID39435922
PMCPMC11870237

What Socratic holds

Textmetadata
LicenceTDM
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 Socratic graph.