Evidence map›Paper›PMID 34858924›Full record

ReviewFrontiers in public health2021

Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.

Rodney C Haring, Jessica W Blanchard, Josephine D Korchmaros, Justin R Lund, Emily A Haozous, Josie Raphaelito, Maui Hudson, Krystal S Tsosie

Abstract readReview
In one paragraph

Review in Frontiers in public health, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing 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

12 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Review
  9. Article
  10. Article
  11. Article
  12. 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.

Rodney C HaringCenter for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Center, Buffalo, NY, United States.
Jessica W BlanchardCenter for Applied Social Research, University of Oklahoma, Norman, OK, United States.
Josephine D KorchmarosSouthwest Institute for Research on Women, University of Arizona, Tucson, AZ, United States.
Justin R LundDepartment of Anthropology, University of Oklahoma, Norman, OK, United States.
Emily A HaozousPacific Institute for Research and Evaluation, Albuquerque, NM, United States.
Josie RaphaelitoCenter for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Center, Buffalo, NY, United States.
Maui HudsonTe Kotahi Research Institute, University of Waikato, Hamilton, New Zealand.
Krystal S TsosieVanderbilt University, Nashville, TN, United States.

Funding

Two-Spirit Films in Indigenous Cancer HealthP30CA016056 · NCI · ROSWELL PARK CANCER INSTITUTE CORP · PI CANDACE S JOHNSON · 1985 to 2026
$116.6M
Trust and Mistrust in American Indian and Alaska Native CommunitiesRM1HG009042 · NHGRI · UNIVERSITY OF OKLAHOMA · PI SPICER, PAUL G · 2016 to 2024
$8.5M
NCI NIH HHS P30 CA016056NHGRI NIH HHS RM1 HG009042
6 · The paper itself

Abstract

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

Indexed as

COVID-19PandemicsGenomicsHumansPower, PsychologicalSARS-CoV-2United StatesAmerican Indian/Alaska Nativebroad consentCOVID-19data use agreementsgenomicsIndigenousIndigenous data sovereigntyvaccine research

Identifiers

PMID34858924
PMCPMC8632014

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.