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On using ethical principles of community-engaged research in translational science

Descriptive

TypeOfResource
Text
TitleInfo
Title
On using ethical principles of community-engaged research in translational science
Name (type = personal)
NamePart (type = family)
Khodyakov
NamePart (type = given)
Dmitry
Affiliation
The RAND Corporation
Role
RoleTerm (type = text); (authority = marcrt)
author
Name (type = personal)
NamePart (type = family)
Mikesell
NamePart (type = given)
Lisa
Affiliation
Communication, Rutgers University
Role
RoleTerm (type = text); (authority = marcrt)
author
Name (type = personal)
NamePart (type = family)
Schraiber
NamePart (type = given)
Ron
Affiliation
The Well-Being Programs, Inc.
Role
RoleTerm (type = code); (authority = marcrt)
author
Name (type = personal)
NamePart (type = family)
Booth
NamePart (type = given)
Marika
Affiliation
The Rand Corporation
Role
RoleTerm (type = text); (authority = marcrt)
author
Name (type = personal)
NamePart (type = family)
Bromley
NamePart (type = given)
Elizabeth
Affiliation
University of California, Los Angeles
Role
RoleTerm (type = text); (authority = marcrt)
author
Name (type = corporate); (authority = RutgersOrg-Department)
NamePart
Communication
Name (type = corporate); (authority = RutgersOrg-School)
NamePart
School of Communication and Information (SC&I)
Genre (authority = RULIB-FS)
Article, Refereed
Genre (authority = NISO JAV)
Accepted Manuscript (AM)
Note (type = peerReview)
Peer reviewed
OriginInfo
DateIssued (encoding = w3cdtf); (qualifier = exact)
2016
Abstract (type = Abstract)
The transfer of new discoveries into both clinical practice and wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of healthcare systems, including patients, and community organizations. Engaging new stakeholders in research, however, calls for a re-consideration or expansion of the meaning of ethics in translational research. We solicited expert opinion to identify ethical principles that may be novel to translational research. To do so, we conducted two online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed nine ethical principles commonly used in community-engaged research in terms of their importance and feasibility for use in translational research. The RAND/UCLA Appropriateness Method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be “grounded in trust.” While the academic panel endorsed “culturally appropriate” and “forthcoming with community about study risks and benefits,” the mixed academic-community panel endorsed “scientifically valid” and “ready to involve community in interpretation and dissemination” as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models may need to account for the interests of, and owe certain ethical obligations to, members of the investigative team and the community at large.
Language
LanguageTerm (authority = ISO 639-3:2007); (type = text)
English
PhysicalDescription
InternetMediaType
application/pdf
Extent
33 p.
Subject (authority = local)
Topic
Community-Engaged Research (CEnR)
Extension
DescriptiveEvent
Type
Citation
DateTime (encoding = w3cdtf)
2016
AssociatedObject
Name
Translational Research
Type
Journal
Relationship
Has part
Detail
52-62
Identifier (type = volume and issue)
171,
Reference (type = url)
http://dx.doi.org/10.1016/j.trsl.2015.12.008
Extension
DescriptiveEvent
Type
Grant award
AssociatedEntity
Role
Funder
Name
National Institutes of Health
AssociatedObject
Type
Grant number
Name
R211ES022093
Subject
Name (authority = LC-NAF)
NamePart (type = corporate)
National Institutes of Health (U.S.)
Subject
Name (authority = LC-NAF)
NamePart (type = corporate)
Patient-Centered Outcomes Research Institute (U.S.)
RelatedItem (type = host)
TitleInfo
Title
Mikesell, Lisa
Identifier (type = local)
rucore30167200001
Location
PhysicalLocation (authority = marcorg); (displayLabel = Rutgers, The State University of New Jersey)
NjNbRU
Identifier (type = doi)
doi:10.7282/T3BK1FHJ
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Rights

RightsDeclaration (AUTHORITY = FS); (ID = rulibRdec0004)
Copyright for scholarly resources published in RUcore is retained by the copyright holder. By virtue of its appearance in this open access medium, you are free to use this resource, with proper attribution, in educational and other non-commercial settings. Other uses, such as reproduction or republication, may require the permission of the copyright holder.
Copyright
Status
Copyright protected
Availability
Status
Open
Reason
Permission or license
RightsEvent
Type
Permission or license
AssociatedObject
Type
License
Name
Multiple author license v. 1
Detail
I hereby grant to Rutgers, The State University of New Jersey (Rutgers) the non-exclusive right to retain, reproduce, and distribute the deposited work (Work) in whole or in part, in and from its electronic format, without fee. This agreement does not represent a transfer of copyright to Rutgers.Rutgers may make and keep more than one copy of the Work for purposes of security, backup, preservation, and access and may migrate the Work to any medium or format for the purpose of preservation and access in the future. Rutgers will not make any alteration, other than as allowed by this agreement, to the Work.I represent and warrant to Rutgers that the Work is my original work. I also represent that the Work does not, to the best of my knowledge, infringe or violate any rights of others.I further represent and warrant that I have obtained all necessary rights to permit Rutgers to reproduce and distribute the Work and that any third-party owned content is clearly identified and acknowledged within the Work.By granting this license, I acknowledge that I have read and agreed to the terms of this agreement and all related RUcore and Rutgers policies.
RightsEvent
Type
Publication notice
Detail
© 2016. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/
RightsEvent
Type
Embargo
DateTime (point = end); (encoding = w3cdtf)
2016-12-18
DateTime (point = start); (encoding = w3cdtf)
2015-12-18
Detail
Access to this PDF has been restricted due to the policy of the publisher, Elsevier, which requires a 12 month embargo from the date the article was published. The article in this repository will be publicly available December 18, 2016.
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Technical

RULTechMD (ID = TECHNICAL1)
ContentModel
Document
CreatingApplication
ApplicationName
Microsoft Macintosh Word
Version
14.0000
DateCreated (point = end); (encoding = w3cdtf); (qualifier = exact)
2015-11-16T22:58:00
DateCreated (point = end); (encoding = w3cdtf); (qualifier = exact)
2016-07-12T13:08:00
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