Evidence map›Paper›PMID 37352851›Full record

ArticleStem cell reports2023

Donor perspectives on informed consent and use of biospecimens for brain organoid research.

Katherine E MacDuffie, Jason L Stein, Dan Doherty, Suman Jayadev, Jessica B Girault, Katherine A Emmons, Madison Rose Glass, Jennifer C Dempsey, Natasha Marrus, Kelly N Botteron and 4 more

Abstract read
In one paragraph

Article in Stem cell reports, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing 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

17 citing papers in PubMed.

  1. Review
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  15. Ethics and regulation of neuronal optogenetics in the European Union.Pflugers Archiv : European journal of physiology · 2023
    Review
  16. Article
  17. 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

14 authors.

Katherine E MacDuffieDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA, USA. Electronic address: kate.macduffie@seattlechildrens.org.
Jason L SteinDepartment of Genetics, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Dan DohertyDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Suman JayadevDepartment of Neurology, University of Washington School of Medicine, Seattle, WA, USA.
Jessica B GiraultDepartment of Psychiatry, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Katherine A EmmonsDepartment of Speech & Hearing Sciences, University of Washington, Seattle, WA, USA.
Madison Rose GlassDepartment of Genetics, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Jennifer C DempseyDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Natasha MarrusDepartment of Psychiatry, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
Kelly N BotteronDepartment of Psychiatry, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
Stephen R DagerDepartment of Radiology, University of Washington School of Medicine, Seattle, WA, USA.
Annette M EstesDepartment of Speech & Hearing Sciences, University of Washington, Seattle, WA, USA.
Joseph PivenDepartment of Psychiatry, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Benjamin S WilfondDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA, USA.

Funding

Cellular and molecular mechanisms governing cortical surface area overgrowth in iPSC-derived neural cells from longitudinally characterized individuals with autismR01HD055741 · NICHD · UNIV OF NORTH CAROLINA CHAPEL HILL · PI Joseph Piven · 2007 to 2026
$52.6M
WUIDDRC Supplement-Supporting the health and well-being of children with intellectual and developmental disability during COVID-19 pandemicP50HD103525 · NICHD · WASHINGTON UNIVERSITY · PI JOSEPH D DOUGHERTY, Natasha Marrus · 2020 to 2026
$15.5M
Mechanisms of Brain Dysmorphology in MN1 C-Terminal Truncation Syndrome, a Novel Intellectual Developmental Disability Disorder P50HD103524 · NICHD · UNIVERSITY OF WASHINGTON · PI DANIEL DOHERTY · 2020 to 2026
$9.9M
Genetic Liability for Autism and Infant Brain and Behavioral DevelopmentK01MH122779 · NIMH · UNIV OF NORTH CAROLINA CHAPEL HILL · PI GIRAULT, JESSICA BULLINS · 2020 to 2024
$919k
The experience of human subjects with brain organoid researchR00MH125328 · NIMH · SEATTLE CHILDREN'S HOSPITAL · PI MACDUFFIE, KATE E. · 2022 to 2024
$711k
The experience of human subjects with brain organoid researchK99MH125328 · NIMH · UNIVERSITY OF WASHINGTON · PI MACDUFFIE, KATE E. · 2020 to 2021
$265k
NICHD NIH HHS P50 HD103524NICHD NIH HHS P50 HD103525NICHD NIH HHS R01 HD055741NIMH NIH HHS K01 MH122779NIMH NIH HHS K99 MH125328NIMH NIH HHS R00 MH125328
6 · The paper itself

Abstract

Debates about the ethics of human brain organoids have proceeded without the input of individuals whose brains are being modeled. Interviews with donors of biospecimens for brain organoid research revealed overall enthusiasm for brain organoids as a tool for biomedical discovery, alongside a desire for ongoing engagement with research teams to learn the results of the research, to allow transfer of decision-making authority over time, and to ensure ethical boundaries are not crossed. Future work is needed to determine the most feasible and resource-efficient way to longitudinally engage donors participating in brain organoid research.

Indexed as

Biological Specimen BanksBiomedical ResearchBrainHumansInformed ConsentOrganoidsTissue Donorsbioethicsbrain organoidsdonor attitudesethicshuman subjectsinformed consentiPSCsneural organoidsresearch policy

Identifiers

PMID37352851
PMCPMC10362497

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.