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IRBs and Data Sharing

Kristine Witkowski, George Alter
2020 Zenodo  
and resources needed How Can IRBs Facilitate Data Sharing?  ...  What role should IRBs play in reviewing proposals and data sharing plans to encourage sharing and re-use of data?  ...  Continuum for The Role of Archives • Informational and training materials specifically created for different audiences of data producers, users, and IRBs. • Research assessing the effectiveness of new  ... 
doi:10.5281/zenodo.3781971 fatcat:df7pho5icvhwrifhjxoyuqgvxm

Sharing Scientific Data III: Planning and the Research Proposal

Nancy Flournoy, Leonard B. Hearne
1990 IRB: Ethics& Human Research  
The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to IRB: Ethics and Human Research.  ...  , managed, stored, and shared with other scientists.  ...  The Role of the IRB and the Funding Agencies We have stressed that it is important to recognize that the efforts that permit the sharing of data have value to the recipient, and to society in general,  ... 
doi:10.2307/3564108 pmid:11651388 fatcat:e2khyf5tqng73f6yrvdhqax2bi

Are we ready to share qualitative research data? Knowledge and preparedness among qualitative researchers, IRB members, and data repository curators

Jessica Mozersky, Heidi Walsh, Meredith Parsons, Tristan McIntosh, Kari Baldwin, James M DuBois
2020 IASSIST Quarterly  
Data sharing maximizes the value of data, which is time and resource intensive to collect.  ...  In contrast, qualitative data are rarely shared in the US but the increasing trend towards data sharing and open science suggest this may be required in future.  ...  IRBs have widely varied policies regarding informed consent forms and data sharing permissions.  ... 
doi:10.29173/iq952 pmid:32205903 pmcid:PMC7089584 fatcat:pjj7idw5dzggvmzdzmm2ris52a

Working with Sensitive Research Data: The Qualitative Data Repository's WSRD Project

Diana Kapiszewski, Colin Elman, Dessislava Kirilova, Sebastian Karcher
2019 Zenodo  
must be accessible to Institutional Review Board (IRB) personnel, data repositories, funders, and journal editors and publishers.  ...  use to describe their data and the steps they took to reduce the risk of using and sharing them.  ...  (From an August 2017 PRIM&R IRB Forum discussion) Bridging the Ethics-Data Sharing Divide5 • The ethical and legal component remains primary for all research involving human participants (via PI, IRB process  ... 
doi:10.5281/zenodo.3612721 fatcat:sg2r7crnwvhgtaygopwoamdpcu

Shifting the consensus on sharing sensitive data

Diana Kapiszewski, Dessislava Kirilova, Christiane Page
2020 Zenodo  
We also propose guidance and informed consent language that anticipate data sharing, around which we seek to build consensus among IRBs.  ...  Because funders and publishers often defer to IRB mandates, data generated through interaction with human participants -- including data that could be unproblematically shared -- are often only available  ...  • Anonymize, de-identify Empirical Study: Tentative Conclusions • Some IRBs have yet to consider how IRB regulations and data sharing interact • IRB offer little guidance to researchers on data sharing  ... 
doi:10.5281/zenodo.3775731 fatcat:6huhhnocm5h73j5hucbq3owyvq

Optimizing Openness in Human Subjects Research: Balancing Transparency and Protection

Dessislava Kirilova, Diana Kapiszewski, Colin Elman
2021 Zenodo  
Integrating IRBs into ongoing conversations about sharing social science research data ethically and legally will help IRB professionals to understand, and enable them to encourage researchers to see,  ...  Funders and publishers/journals, for instance, are both sources and "enforcers" of data management and sharing mandates.  ...  human research protection programs → often trend-setters for others 2019 IRBs and Data Sharing Study Data: 2019 IRBs and Data Sharing Study What we found:  ... 
doi:10.5281/zenodo.5181108 fatcat:re7m37afcffxhboc5ztcjxy2fm

IRB practices and policies regarding the secondary research use of biospecimens

Aaron J Goldenberg, Karen J Maschke, Steven Joffe, Jeffrey R Botkin, Erin Rothwell, Thomas H Murray, Rebecca Anderson, Nicole Deming, Beth F Rosenthal, Suzanne M Rivera
2015 BMC Medical Ethics  
Results: Our data indicate that IRBs take varying approaches to protocol review, risk assessment, and data sharing, especially when specimens are not anonymized.  ...  Specifically, IRB ADs were asked about consent for future use of biospecimens, assignment of risk for studies using biobanked specimens, and sharing of biospecimens/data.  ...  SJ: Participated in study design, implementation, and data analysis. JB: Participated in study design, implementation, and data analysis. ER: Participated in data analysis.  ... 
doi:10.1186/s12910-015-0020-1 pmid:25953109 pmcid:PMC4426182 fatcat:f5vmligqendtrosysumk3rdyz4

Consenting for Current Genetic Research: Views of Canadian Institutional Review Board Members

Iris Jaitovich Groisman, Beatrice Godard
2015 Journal of Clinical Research & Bioethics  
We report herein the results pertaining to secondary use, sharing of material and data and recontacting participants.  ...  both material and the genetic generated data to enrich study results.  ...  in distributing the survey, and to all IRB members responding to our survey.  ... 
doi:10.4172/2155-9627.1000231 fatcat:prq6wks3rjd2vj4wuwgb6w2xpa

An epic journey in sharing: The story of a young researcher's journey to share her data and the information professionals who tried to help

Sebastian Karcher, Sophia Lafferty-Hess
2019 IASSIST Quarterly  
Our story has moments of joy, such as when our researcher is solely motivated to share because she wants others to be able to reuse her unique data; dramatic plot twists involving IRBs; and a poignant  ...  Sharing data can be a journey with various characters, challenges along the way, and uncertain outcomes.  ...  ACKNOWLEDGEMENTS The authors would like to thank their colleagues, Jennifer Darragh and Dessi Kirilova, who played a part in this sharing epic journey.  ... 
doi:10.29173/iq942 fatcat:lwmx3ol24bazvlvklm2oygrkte

Training for de-identifying human subjects data for sharing: a viable library service

David Fearon, Jennifer Darragh
2020 Zenodo  
Since 2011, Johns Hopkins Data Management Services (DMS) has provided consulting and training on managing, sharing and preserving research data, and operates the JHU Data Archive.  ...  Last year, DMS consultant Dave Fearon collaborated with Jen Darragh, JHU's Data Services and Sociology Librarian, providing training on removing identifiers from human subjects data for sharing and archiving  ...  during the project Contexts for developing data de-Identification training Sharing and archiving human subjects data: a role for Research Data Services IRB: plans for protecting subjects and data acquisition  ... 
doi:10.5281/zenodo.3777191 fatcat:4ojucthdmnhozlmchuau4d4fye

Practical Tips for Ethical Data Sharing

Michelle N. Meyer
2018 Advances in Methods and Practices in Psychological Science  
This Tutorial provides practical dos and don'ts for sharing research data in ways that are effective, ethical, and compliant with the federal Common Rule.  ...  Turning to data that have already been collected, I discuss the ethical and regulatory issues raised by sharing data when the consent form either was silent about data sharing or explicitly promised participants  ...  But researchers and IRBs should not assume that data cannot ethically be retained and shared.  ... 
doi:10.1177/2515245917747656 fatcat:cldlpxqk4zhwpnaoxepvah7zvu

Investigator Experiences and Attitudes About Research With Biospecimens

Suzanne M. Rivera, Aaron Goldenberg, Beth Rosenthal, Heide Aungst, Karen J. Maschke, Erin Rothwell, Rebecca A. Anderson, Jeffrey Botkin, Steven Joffe
2015 Journal of Empirical Research on Human Research Ethics  
However, regulatory and procedural requirements may impede investigators' efforts to share biospecimens and data within and across institutions.  ...  While a number of studies have explored experiences and attitudes of study participants and others about biospecimen and data sharing, less is known about investigators' perspectives.  ...  Research: Ethical and Policy Challenges.  ... 
doi:10.1177/1556264615610199 pmid:26564943 pmcid:PMC4646730 fatcat:baebkcnywzdebofx5t4sgwl4qq

Consenting for current genetic research: is Canadian practice adequate?

Iris Jaitovich Groisman, Nathalie Egalite, Beatrice Godard
2014 BMC Medical Ethics  
Methods: We examined the subjects of secondary use, sharing of materials and data, and recontacting participants as outlined in the Canadian Informed Consent templates and the accompanying IRB instructions  ...  A feature of the IRB-approved consent documents for genetic studies on brain and mental health disorders using NGS technologies, offered a complete explanation on sharing material and data and the use  ...  Acknowledgements This research and the work presented in the manuscript have been supported by a Genome Quebec grant.  ... 
doi:10.1186/1472-6939-15-80 pmid:25410958 pmcid:PMC4247628 fatcat:o5x73dokrjbf5ic3shqgfcrydq

Opinion: Why institutional review boards should have a role in the open science movement

Sean Grant, Kathryn E. Bouskill
2019 Proceedings of the National Academy of Sciences of the United States of America  
Prominent open science practices include registration of study protocols and preanalysis plans; materials, data, and code sharing; and publication of summary findings in open access outlets (1).  ...  Open science involves the use of practices across the research life cycle that facilitate the transparency, reproducibility, and availability of scientific products and output.  ...  Acknowledgments This work was supported by a grant from the Robert Wood Johnson Foundation "Increasing Openness and Transparency in Research" program (PI: Grant; 74420).  ... 
doi:10.1073/pnas.1916420116 pmid:31641094 pmcid:PMC6815121 fatcat:u5zjmrf5xzhddjsdnzmngechj4

IRB Issues and Archival Data: From Data Deposit to Data Use

Amy Pienta
2020 Zenodo  
IRB often provide oversight of data archiving plans and informed consent statements may prohibit public archiving of data.  ...  This presentation will describe the importance of understanding the IRB process with respect to archiving and use of secondary research data.  ...  NIH Data Sharing Policy The NIH expects and supports the timely release and sharing of final research data from NIH-supported studies for use by other researchers.  ... 
doi:10.5281/zenodo.3782141 fatcat:7dziqn4n6zgezms5lu6jfdbsui
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