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; Stephen R. Dager; Annette M. Estes; Joseph Piven; Benjamin S. Wilfond

doi:10.1016/j.stemcr.2023.05.019

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, Stephen R. Dager, Annette M. Estes, Joseph Piven, Benjamin S. Wilfond

Research output: Contribution to journal › Short survey › peer-review

5 Scopus citations

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.

Original language	English
Pages (from-to)	1389-1393
Number of pages	5
Journal	Stem Cell Reports
Volume	18
Issue number	7
DOIs	https://doi.org/10.1016/j.stemcr.2023.05.019
State	Published - Jul 11 2023

Keywords

bioethics
brain organoids
donor attitudes
ethics
human subjects
iPSCs
informed consent
neural organoids
research policy

Access to Document

10.1016/j.stemcr.2023.05.019

Cite this

MacDuffie, K. E., Stein, J. L., Doherty, D., Jayadev, S., Girault, J. B., Emmons, K. A., Glass, M. R., Dempsey, J. C., Marrus, N., Botteron, K. N., Dager, S. R., Estes, A. M., Piven, J., & Wilfond, B. S. (2023). Donor perspectives on informed consent and use of biospecimens for brain organoid research. Stem Cell Reports, 18(7), 1389-1393. https://doi.org/10.1016/j.stemcr.2023.05.019

@article{542ae9f91daf4b7d9a83bc2a3416ab98,

title = "Donor perspectives on informed consent and use of biospecimens for brain organoid research",

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.",

keywords = "bioethics, brain organoids, donor attitudes, ethics, human subjects, iPSCs, informed consent, neural organoids, research policy",

author = "MacDuffie, {Katherine E.} and Stein, {Jason L.} and Dan Doherty and Suman Jayadev and Girault, {Jessica B.} and Emmons, {Katherine A.} and Glass, {Madison Rose} and Dempsey, {Jennifer C.} and Natasha Marrus and Botteron, {Kelly N.} and Dager, {Stephen R.} and Estes, {Annette M.} and Joseph Piven and Wilfond, {Benjamin S.}",

note = "Publisher Copyright: {\textcopyright} 2023 The Author(s)",

year = "2023",

month = jul,

day = "11",

doi = "10.1016/j.stemcr.2023.05.019",

language = "English",

volume = "18",

pages = "1389--1393",

journal = "Stem Cell Reports",

issn = "2213-6711",

number = "7",

}

TY - JOUR

T1 - Donor perspectives on informed consent and use of biospecimens for brain organoid research

AU - MacDuffie, Katherine E.

AU - Stein, Jason L.

AU - Doherty, Dan

AU - Jayadev, Suman

AU - Girault, Jessica B.

AU - Emmons, Katherine A.

AU - Glass, Madison Rose

AU - Dempsey, Jennifer C.

AU - Marrus, Natasha

AU - Botteron, Kelly N.

AU - Dager, Stephen R.

AU - Estes, Annette M.

AU - Piven, Joseph

AU - Wilfond, Benjamin S.

PY - 2023/7/11

Y1 - 2023/7/11

N2 - 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.

AB - 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.

KW - bioethics

KW - brain organoids

KW - donor attitudes

KW - ethics

KW - human subjects

KW - iPSCs

KW - informed consent

KW - neural organoids

KW - research policy

UR - http://www.scopus.com/inward/record.url?scp=85164270378&partnerID=8YFLogxK

U2 - 10.1016/j.stemcr.2023.05.019

DO - 10.1016/j.stemcr.2023.05.019

M3 - Short survey

C2 - 37352851

AN - SCOPUS:85164270378

SN - 2213-6711

VL - 18

SP - 1389

EP - 1393

JO - Stem Cell Reports

JF - Stem Cell Reports

IS - 7

ER -

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

Abstract

Keywords

Access to Document

Other files and links

Fingerprint

Cite this