Evidence map›Paper›PMID 34871700›Full record

ArticleAmerican journal of kidney diseases : the official journal of the National Kidney Foundation2022

A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project.

Catherine R Butler, Paul S Appelbaum, Heather Ascani, Mark Aulisio, Catherine E Campbell, Ian H de Boer, Ashveena L Dighe, Daniel E Hall, Jonathan Himmelfarb, Richard Knight and 9 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in American journal of kidney diseases : the official journal of the National Kidney Foundation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

19 authors.

Catherine R ButlerDivision of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington; Seattle-Denver Health Services Research and Development Center of Innovation, Veterans Affairs Puget Sound Health Care System, Seattle, Washington. Electronic address: cathb@nephrology.washington.edu.
Paul S AppelbaumDepartment of Psychiatry, Vagelos College of Physicians & Surgeons, Columbia University, New York, New York; New York State Psychiatric Institute, New York, New York.
Heather AscaniDivision of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan.
Mark AulisioDepartment of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, Ohio; Center for Biomedical Ethics, MetroHealth System, Cleveland, Ohio.
Catherine E CampbellKidney Precision Medicine Project Patient Partner, American Association of Kidney Patients, Tampa, Florida; Sigma Theta Tau International Honor Society, Case Management Society of America, AARP Volunteer Nursing Leadership Board.
Ian H de BoerDivision of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
Ashveena L DigheDivision of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
Daniel E HallDepartment of Surgery, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; Department of Anesthesiology and Perioperative Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; Wolff Center at UPMC, Pittsburgh, Pennsylvania; Center for Health Equity Research and Promotion and Geriatric Research Education and Clinical Center, VA Pittsburgh Healthcare System, Pittsburgh, Pennsylvania.
Jonathan HimmelfarbDivision of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
Richard KnightKidney Precision Medicine Project Patient Partner, American Association of Kidney Patients, Tampa, Florida; American Association of Kidney Patients, Pittsburgh, Pennsylvania.
Karla MehlDivision of Nephrology, Irving Medical Center, Columbia University, New York, New York.
Raghavan MuruganCenter for Critical Care Nephrology, Department of Critical Care Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.
Sylvia E RosasKidney and Hypertension Unit, Joslin Diabetes Center, Harvard Medical School, Boston, Massachusetts.
John R SedorCleveland Clinic Lerner College of Medicine, Case Western Reserve University, Cleveland, Ohio; Department of Nephrology and Hypertension, Glickman Urological and Kidney and Lerner Research Institutes, Cleveland Clinic Foundation, Cleveland, Ohio.
John F O'TooleCleveland Clinic Lerner College of Medicine, Case Western Reserve University, Cleveland, Ohio; Department of Nephrology and Hypertension, Glickman Urological and Kidney and Lerner Research Institutes, Cleveland Clinic Foundation, Cleveland, Ohio.
Katherine R TuttleDivision of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
Sushrut S WaikarSection of Nephrology, Boston University School of Medicine and Boston Medical Center, Boston, Massachusetts; Renal Division, Brigham & Women's Hospital, Boston, Massachusetts.
Michael FreemanDivision of Pediatric Nephrology and Hypertension, Department of Pediatrics and Humanities, Penn State College of Medicine, Hershey, Pennsylvania.
Kidney Precision Medicine Project

Funding

SPECIAL ASSAY COREP30DK036836 · NIDDK · JOSLIN DIABETES CENTER · PI ROHIT N. KULKARNI · 1986 to 2026
$50.5M
Central Hub for Kidney Precision MedicineU24DK114886 · NIDDK · UNIVERSITY OF WASHINGTON · PI Jonathan Himmelfarb, Matthias Kretzler · 2022 to 2026
$21.1M
ConProject-002U2CDK114886 · NIDDK · UNIVERSITY OF WASHINGTON · PI HIMMELFARB, JONATHAN · 2017 to 2021
$21.0M
KPMP Kidney Mapping and Atlas Project (KMAP)U01DK133090 · NIDDK · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Jonathan Himmelfarb, Matthias Kretzler · 2022 to 2026
$10.4M
lntegration and Visualization of Diverse Biological DataR01GM071966 · NIGMS · PRINCETON UNIVERSITY · PI TROYANSKAYA, OLGA G · 2005 to 2022
$6.4M
Single cell multiomic and spatial atlas of acute and chronic kidney injuryU01DK114933 · NIDDK · WASHINGTON UNIVERSITY · PI Sanjay Jain · 2022 to 2026
$5.0M
Boston Chronic Kidney Disease Research Biopsy CenterU01DK133092 · NIDDK · BOSTON MEDICAL CENTER · PI Sylvia E Rosas, Sushrut S. Waikar · 2022 to 2026
$3.5M
PREcision Medicine through IntErrogation of Rna in the kidnEy (PREMIERE)U01DK114907 · NIDDK · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Nir Hacohen, Jeffrey Benton Hodgin · 2022 to 2026
$3.2M
Spatial Metabolomics for Human KidneysUH3DK114920 · NIDDK · UNIVERSITY OF TEXAS HLTH SCIENCE CENTER · PI SHARMA, KUMAR · 2019 to 2021
$2.7M
Nephron Sub-segmental Omics and Quantitative 3D Imaging of Human Kidney.UH3DK114923 · NIDDK · INDIANA UNIVERSITY INDIANAPOLIS · PI ASHKAR, TAREK MAURICE, DAGHER, PIERRE C · 2019 to 2021
$2.2M
PREcision Medicine through IntErrogation of Rna in the kidnEy (PREMIERE)UH3DK114907 · NIDDK · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI HACOHEN, NIR, HODGIN, JEFFREY BENTON · 2019 to 2021
$1.8M
Single-nucleus sequencing and in situ mapping of mRNA molecules in human kidneyUH3DK114933 · NIDDK · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI JAIN, SANJAY, ZHANG, KUN · 2019 to 2021
$1.8M
NIDDK NIH HHS P30 DK036836NIDDK NIH HHS U01 DK114907NIDDK NIH HHS U01 DK114933NIDDK NIH HHS U01 DK133090NIDDK NIH HHS U01 DK133092NIDDK NIH HHS U24 DK114886NIDDK NIH HHS U2C DK114886NIDDK NIH HHS UG3 DK114861NIDDK NIH HHS UH3 DK114861NIDDK NIH HHS UH3 DK114866NIDDK NIH HHS UH3 DK114870NIDDK NIH HHS UH3 DK114907NIDDK NIH HHS UH3 DK114908NIDDK NIH HHS UH3 DK114915NIDDK NIH HHS UH3 DK114920NIDDK NIH HHS UH3 DK114923NIDDK NIH HHS UH3 DK114926NIDDK NIH HHS UH3 DK114933NIDDK NIH HHS UH3 DK114937NIGMS NIH HHS R01 GM071966
6 · The paper itself

Abstract

An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.

Indexed as

Precision MedicineResearch PersonnelHumansInformed ConsentKidneyRisk AssessmentAltruismautonomycommunity engagementhuman subjectsinformed consentinstitutional review boardskidney biopsynon-maleficenceprecision medicineresearch ethicsresearch participationresearch risks and benefitssafety monitoringThe Kidney Precision Medicine Project

Identifiers

PMID34871700
PMCPMC9166631

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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.