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Linked Data Contracts to Support Data Protection and Data Ethics in the Sharing of Scientific Data 55-62

Ensar Hadziselimovic, Kaniz Fatema, Harshvardhan J. Pandit, Dave Lewis
2018 Zenodo  
In light of the new EU General Data Protection Regulation (GDPR) [1]there are certain challenges in relation to the sharing of scientific data.  ...  For a data controller in a research institute, the requirement to monitor, implement and demonstrate conformance to the provisions of data subjects' rights represents a major upshift in the complexity  ...  Acknowledgements Supported by the ADAPT Centre for Digital Content Technology which is funded under the SFI Research Centres Programme (Grant 13/RC/2106) and is co-funded under the European Regional Development  ... 
doi:10.5281/zenodo.3246472 fatcat:4stttdljv5fdppjesd3w45x6ra

Integrating the Management of Personal Data Protection and Open Science with Research Ethics

Dave Lewis, Joss Moorkens, Kaniz Fatema
2017 Proceedings of the First ACL Workshop on Ethics in Natural Language Processing  
We analyse the challenges that arise and the opportunities to address many of them through the use of existing open data practices for sharing language research data.  ...  This paper examines the impact of the EU General Data Protection Regulation, in the context of the requirement from many research funders to provide open access research data, on current practices in Language  ...  Acknowledgements Supported by the ADAPT Centre for Digital Content Technology which is funded under the SFI Research Centres Programme (Grant 13/RC/2106) and is co-funded under the European Regional Development  ... 
doi:10.18653/v1/w17-1607 dblp:conf/ethnlp/LewisMF17 fatcat:fqrv4thzybbd5hysnexd4ebtyi

Data Protection and Ethics Requirements for Multisite Research with Health Data: A Comparative Examination of Legislative Governance Frameworks and the Role of Data Protection Technologies*

James Scheibner, Marcello Ienca, Sotiria Kechagia, Juan Ramon Troncoso-Pastoriza, Jean Louis Raisaro, Jean-Pierre Hubaux, Jacques Fellay, Effy Vayena
2020 Journal of Law and the Biosciences  
This effect is exacerbated when transferring data across jurisdictions due to the divergences in data protection and research ethics laws.  ...  Accordingly, we adopt a comparative approach using the concept of data accessibility when examining data protection and research ethics laws in seven jurisdictions.  ...  The NHMRC National Statement on Ethical Conduct in Research then allows researchers to link identifiable patient data for scientific research purposes.  ... 
doi:10.1093/jlb/lsaa010 pmid:32733683 pmcid:PMC7381977 fatcat:2ssgfjrzhva3zevybhhndvofk4

D14.2 Popd - Requirement No. 4

Pascal Khalem, Jerry Lanfear, Regina Becker
2018 Zenodo  
This deliverable describes the ELIXIR risk management strategy with respect to the General Data Protection Regulation (GDPR)1, which came into force on 25 May 2018.  ...  The strategy describes the essential procedures and practices within ELIXIR concerning GDPR compliance, performing risk assessment and mitigation.  ...  ELIXIR will continue to collaborate closely with the GA4GH to support the development and implementation of the emerging global code-of-conduct for management and sharing of personal research data and  ... 
doi:10.5281/zenodo.1452482 fatcat:vr2fz5yl5fg77pdsc3n575axjm

RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

Rachel Thompson, Louise Johnston, Domenica Taruscio, Lucia Monaco, Christophe Béroud, Ivo G. Gut, Mats G. Hansson, Peter-Bram A. 't Hoen, George P. Patrinos, Hugh Dawkins, Monica Ensini, Kurt Zatloukal (+7 others)
2014 Journal of general internal medicine  
Ethical/social Lack of willingness of participating researchers and organizations to share data Implement mechanisms for protecting unpublished data and for "incentivization" of data sharing already developed  ...  Platform development/Ethical Implementation of a unique identifier (RD-ID) creates ethical and data-protection difficulties Build on existing highly robust systems for data sharing with privacy protection  ...  Conflict of interest: The authors declare that they do not have a conflict of interest.  ... 
doi:10.1007/s11606-014-2908-8 pmid:25029978 pmcid:PMC4124112 fatcat:wqhv5ldeonbyhas5v3ocnq4mye

Corbel Elsi Guidance For New Scientific, Technological And Cross-Border Developments Using A "Help-Desk Format"

Michaela Th. Mayrhofer, Irene Schlünder
2018 Zenodo  
Long lists of links, legalistic language, and multiple links have to be avoided wherever possible.  ...  In addition, the knowledge base connects to frequently asked questions, promotes contract and informed consent templates, how-to-guides, best-practice models, and scripts.  ...  Acknowledgments This article provides an overview of the activities and results toward a comprehensive ELSI support for the BMS RIs.  ... 
doi:10.5281/zenodo.1408803 fatcat:xeehzczvh5hnfkikexkx4riyta

Understanding the care.data conundrum: New information flows for economic growth

Paraskevas Vezyridis, Stephen Timmons
2017 Big Data & Society  
However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social  ...  The paper explores the concerns, expectations and implications of the National Health Service (NHS) England care.data programme: a national data sharing initiative of linked electronic health records for  ...  In any case, when it comes to sharing of NHS data a rigorous opt-out process is expected to serve as the 'ethical minimum' (Sterckx et al., 2015) .  ... 
doi:10.1177/2053951716688490 fatcat:5rdfepyq4jg4phxclezmxmryrq

Principles of data governance for research organizations - INRAE's approach

Gilles Aumont, Michaël Chelle, Esther Dzale-Yeumo, Odile Hologne, Olivier Philippe, Hadi Quesneville, Stéphanie Rennes
2020 Zenodo  
INRAE has recently set out its principles of "data governance", to cover all the processes required to manage and enhance data sharing on the basis of ethics, legal, economic, technical, and scientific  ...  With this document all scientists, administrative support, and data managers involved in the data life cycle have a shared understanding of the rationale guiding the global data framework.  ...  Acknowledgements We warmly thank our INRAE collaborators for their active involvement during interviews, working group meetings and general discussions, and for the richness of the exchanges.  ... 
doi:10.5281/zenodo.3964001 fatcat:tacfn2vir5hk3anydxnrvoufvm

Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics Platform

Shannon Lefaivre, Brendan Behan, Anthony Vaccarino, Kenneth Evans, Moyez Dharsee, Tom Gee, Costa Dafnas, Tom Mikkelsen, Elizabeth Theriault
2019 Frontiers in Genetics  
Underlying the platform is a robust and scalable data governance structure which allows for the flexibility to advance scientific understanding, while protecting the privacy of research participants.  ...  The platform supports the capture, storage, federation, sharing, and analysis of different data types across several brain disorders.  ...  AUTHOR CONTRIBUTIONS SL wrote the first draft of the paper and prepared the manuscript. All authors contributed to the development of Brain-CODE policies and commented on/revised the manuscript.  ... 
doi:10.3389/fgene.2019.00191 pmid:30984233 pmcid:PMC6450217 fatcat:wfucw3gkzvgfxcjmc2wefv7wcm

Data literacy training needs of biomedical researchers

Lisa M. Federer, Ya-Ling Lu, Douglas J. Joubert
2016 Journal of the Medical Library Association  
Protecting confidentiality and personal privacy: NIH is working to enhance the policy framework for enabling the ethical sharing of data in less restrictive ways (e.g., through participant consent for  ...  Data-sharing plans that are approved and made a term and condition in the Notice of Award or the Contract Award can be enforced.  ... 
doi:10.3163/1536-5050.104.1.008 pmid:26807053 pmcid:PMC4722643 fatcat:7b7gqfjrmbc57pmqk6ljt57o7i

Building a data sharing model for global genomic research

Patricia Kosseim, Edward S Dove, Carman Baggaley, Eric M Meslin, Fred H Cate, Jane Kaye, Jennifer R Harris, Bartha M Knoppers
2014 Genome Biology  
The opportunities presented by data sharing models One of the great opportunities in the genomics era is exploring how human genes influence health, disease and biologic pathways, and how the knowledge  ...  Conducting scalable projects has been aided by the convergence of two key developments: vast improvements in, and access to, low-cost sequencing technology, and the increased power and sophistication of  ...  Acknowledgements PK and CB contributed to this article in their own personal capacity; their views do not necessarily reflect the views of the Office of the Privacy Commissioner of Canada.  ... 
doi:10.1186/s13059-014-0430-2 pmid:25221857 pmcid:PMC4282015 fatcat:alriygox5fdljkhwc2vsvc6i5a

SIENNA D5.2: An international code of conduct for data sharing in genomics: A proposal

Amal Matar
2021 Zenodo  
As part of the SIENNA consortium proposals (WP5), the deliverable proposes an international code of conduct for data sharing in genomics.  ...  It builds on results of D 2.3: Survey of REC approaches and codes for genomics, D2.4: Ethical analysis of human genetics and genomics and D5.6: Recommendations for the enhancement of the existing legal  ...  Fortunately, the Data Protection Act (DPA) of the UK shares significant resemblance to the GDPR 36 .  ... 
doi:10.5281/zenodo.5519177 fatcat:fhxfdugaerek3nnsyblnhvzt54

D3.3: Draft Policy Recommendations [article]

Serena Battaglia, Steve Canham, Valentino Cavalli, Fruszina Molnar-Gabor, Natalia Manola, Elli Papadopoulou, Christian Ohmann, Dale Robertson, Paul Rouse, Amelie Schenk, Raul Thorat, Prodromos Tsiavos (+1 others)
2018 Zenodo  
The deliverable covers four areas: Open Science and Open Scholarship; Data Protection, Assurance and Special Information Regulation Regimes; Procurement; and Ethics.  ...  This Deliverable proposes initial draft policy recommendations to assist in removing or diminishing barriers to the EOSC and to Open Science.  ...  for the scientific community for storing, sharing and reusing scientific data and results.  ... 
doi:10.5281/zenodo.3387569 fatcat:jdrappxdezcmbmynvxrnvxhqeu

Model consent clauses for rare disease research

Minh Thu Nguyen, on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé (+2 others)
2019 BMC Medical Ethics  
needs of participants, and to ensure proper ethical and legal use of data sources and participants' overall protection.  ...  To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational  ...  Acknowledgements The paper is founded on the expert contributions of the Task We would like to thank IRDiRC members for sending in consent forms and consent clauses.  ... 
doi:10.1186/s12910-019-0390-x pmid:31370847 pmcid:PMC6676617 fatcat:ktb6cibb5nbxlhwdg3l7w6eigu

A human rights approach to an international code of conduct for genomic and clinical data sharing

Bartha M. Knoppers, Jennifer R. Harris, Isabelle Budin-Ljøsne, Edward S. Dove
2014 Human Genetics  
progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions.  ...  It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing. from clinical and population research, enables researchers to connect the diverse types of datasets  ...  Acknowledgments the authors are grateful for the funding sup-  ... 
doi:10.1007/s00439-014-1432-6 pmid:24573176 pmcid:PMC4053599 fatcat:hplfxjljwngtxnzhpfiocplyse
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