Evidence map›Paper›PMID 34357113›Full record

ArticleJournal of personalized medicine2021

Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.

Mary A Majumder, Matthew L Blank, Janis Geary, Juli M Bollinger, Christi J Guerrini, Jill Oliver Robinson, Isabel Canfield, Robert Cook-Deegan, Amy L McGuire

Open access · goldAbstract read
In one paragraph

Article in Journal of personalized medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed, 1 pooled it
0.9field-weighted citation impact, top 23% of its field
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

7 citing papers in PubMed, 1 synthesis or guideline pooled it, 8 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. 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

9 authors at 3 institutions in 1 country.

Mary A MajumderCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Matthew L BlankCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Janis GearySchool for the Future of Innovation in Society and Consortium for Science, Policy & Outcomes, Arizona State University Barrett & O'Connor Washington Center, 1800 I (Eye) Street, NW, Washington, DC 20006, USA.
Juli M BollingerCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Christi J GuerriniCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Jill Oliver RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Isabel CanfieldDepartment of Philosophy, University of Notre Dame, Malloy Hall, Notre Dame, IN 46556, USA.
Robert Cook-DeeganSchool for the Future of Innovation in Society and Consortium for Science, Policy & Outcomes, Arizona State University Barrett & O'Connor Washington Center, 1800 I (Eye) Street, NW, Washington, DC 20006, USA.ORCID 0000-0002-8251-4237
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77005, USA.
Baylor College of Medicine · USCenter for Science in the Public Interest (United States) · USUniversity of Notre Dame · US

Funding

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
NCI NIH HHS R01 CA237118
6 · The paper itself

Abstract

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources-a "cancer gene variant commons"-incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers.

Indexed as

data resourcesdata sharingequityhereditary cancerhuman geneticsprivacy and security

Identifiers

PMID34357113
PMCPMC8305920
OpenAlexW3180235561

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.