Evidence map›Paper›PMID 35225705›Full record

ArticleJournal of empirical research on human research ethics : JERHRE2022

Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of empirical research on human research ethics : JERHRE, 2022. 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. Review
  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

8 authors.

Erika Blacksher7284University of Washington, Seattle, Washington, USA.ORCID 0000-0002-0098-7154
Susan Brown Trinidad7284University of Washington, Seattle, Washington, USA.
R Brian Woodbury129032Southcentral Foundation, Anchorage, Alaska, USA.
Scarlett E HopkinsOregon Health & Science University, Portland, Oregon, USA.
Erica L Woodahl307078University of Montana, Missoula, Montana, USA.
Bert B BoyerOregon Health & Science University, Portland, Oregon, USA.
Wylie Burke7284University of Washington, Seattle, Washington, USA.
Vanessa HiratsukaUniversity of Alaska, Anchorage, Alaska, USA.ORCID 0000-0002-4234-9441

Funding

Trust and Mistrust in American Indian and Alaska Native CommunitiesRM1HG009042 · NHGRI · UNIVERSITY OF OKLAHOMA · PI SPICER, PAUL G · 2016 to 2024
$8.5M
Vitamin K gene network: Variant discovery and characterizationP01GM116691 · NIGMS · UNIVERSITY OF WASHINGTON · PI RETTIE, ALLAN EDWARD · 2016 to 2020
$7.6M
Community-engaged Research Toward Precision Medicine with AIAN PeopleR01HG009500 · NHGRI · UNIVERSITY OF ALASKA FAIRBANKS · PI BOYER, BERT BRANDON, DILLARD, DENISE A · 2017 to 2019
$2.0M
NHGRI NIH HHS R01 HG009500NHGRI NIH HHS RM1 HG009042NIGMS NIH HHS P01 GM116691
6 · The paper itself

Abstract

Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.

Indexed as

American Indian or Alaska NativeHumansMoralsPrecision MedicineAmerican Indian and Alaska Nativecommunity-based participatory researchcommunity engagementdeliberative methodsdemocratic deliberationethicsprecision medicine research

Identifiers

PMID35225705
PMCPMC9173705

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.