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  1. Article ; Online: Communicating science: epigenetics in the spotlight.

    Dyke, Stephanie O M / Ennis, Catherine A / Joly, Yann / Walter, Jörn / Siebert, Reiner / Pastinen, Tomi

    Environmental epigenetics

    2020  Volume 6, Issue 1, Page(s) dvaa015

    Abstract: Given the public interest in epigenetic science, this study aimed to better understand media representations of epigenetics in national newspaper coverage in various regions in North America, Europe, and Asia. Content analysis was used to study media ... ...

    Abstract Given the public interest in epigenetic science, this study aimed to better understand media representations of epigenetics in national newspaper coverage in various regions in North America, Europe, and Asia. Content analysis was used to study media messages about epigenetics, their policy focus, and the balance of the reporting. We identified several recurring themes in the news reports, including policy messages relating to individual and societal responsibilities. We also found shortcomings in the media's portrayal of epigenetic science, and sought to identify potential causes by considering the underlying scientific evidence that the media reported on. A case study analysis showed that the results of epigenetic studies were often overstated in academic research publications due to common experimental limitations. We suggest that defining standardized criteria with which to evaluate epigenetic studies could help to overcome some of the challenges inherent in translating complex epigenetic research findings for non-technical audiences, and present a Press Kit template that researchers can adapt and use to aid in the development of accurate and balanced press releases.
    Language English
    Publishing date 2020-11-18
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 2831217-X
    ISSN 2058-5888 ; 2058-5888
    ISSN (online) 2058-5888
    ISSN 2058-5888
    DOI 10.1093/eep/dvaa015
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies.

    Shabani, Mahsa / Dyke, Stephanie O M / Marelli, Luca / Borry, Pascal

    Genetics in medicine : official journal of the American College of Medical Genetics

    2018  Volume 21, Issue 5, Page(s) 1031–1037

    Abstract: Access to detailed variant data is key to inform and verify the interpretation of genomic data. Clinical laboratories can play a significant role in sharing patients' data through public variant databases. To facilitate data sharing, various public ... ...

    Abstract Access to detailed variant data is key to inform and verify the interpretation of genomic data. Clinical laboratories can play a significant role in sharing patients' data through public variant databases. To facilitate data sharing, various public databases, such as ClinVar and DECIPHER have been established, which accept data submission from laboratories, clinicians, researchers, and patients. Despite clear benefits to sharing, questions may arise about the adequate form of consent to be obtained from patients when sharing data from their clinical tests through public databases. In this paper, we provide an overview and critical analysis of the relevant consent policies of the major public databases, and of the consent forms of clinical laboratories that share variant data via ClinVar.
    MeSH term(s) Consent Forms ; Databases, Genetic ; Genetic Privacy ; Information Dissemination ; Informed Consent ; Laboratories ; Public Policy
    Language English
    Publishing date 2018-10-08
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1038/s41436-018-0316-x
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.

    Rahimzadeh, Vasiliki / Dyke, Stephanie O M / Knoppers, Bartha M

    Biopreservation and biobanking

    2016  Volume 14, Issue 3, Page(s) 256–259

    Abstract: The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. ... ...

    Abstract The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. Worldwide representation of institutions, funders, researchers, and patient advocacy groups at the Global Alliance is testament to a shared ideal that sees maximizing the public good as a chief priority of genomic innovation in health. The Global Alliance has made a critical stride in this regard with the development of its Framework for Responsible Sharing of Genomic and Health-related Data.(1) This article first discusses the human rights pillars that underlie the Framework and mission of the Global Alliance. Second, it outlines the Global Alliance's use of data governance policies through a number of demonstration projects. Finally, the authors describe how the Global Alliance envisions international data sharing moving forward in the postgenomic era.
    MeSH term(s) Genomics/legislation & jurisprudence ; Genomics/organization & administration ; Global Health/legislation & jurisprudence ; Humans ; Information Dissemination/legislation & jurisprudence ; International Cooperation/legislation & jurisprudence ; Practice Guidelines as Topic ; Translational Medical Research/legislation & jurisprudence ; Translational Medical Research/organization & administration
    Language English
    Publishing date 2016-06
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2593993-2
    ISSN 1947-5543 ; 1947-5535
    ISSN (online) 1947-5543
    ISSN 1947-5535
    DOI 10.1089/bio.2016.0005
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Are Data Sharing and Privacy Protection Mutually Exclusive?

    Joly, Yann / Dyke, Stephanie O M / Knoppers, Bartha M / Pastinen, Tomi

    Cell

    2016  Volume 167, Issue 5, Page(s) 1150–1154

    Abstract: We review emerging strategies to protect the privacy of research participants in international epigenome research: open consent, genome donation, registered access, automated procedures, and privacy-enhancing technologies. ...

    Abstract We review emerging strategies to protect the privacy of research participants in international epigenome research: open consent, genome donation, registered access, automated procedures, and privacy-enhancing technologies.
    MeSH term(s) Genomics/ethics ; Genomics/legislation & jurisprudence ; High-Throughput Nucleotide Sequencing ; Human Genome Project/ethics ; Human Genome Project/legislation & jurisprudence ; Humans ; Information Dissemination ; Privacy ; Sequence Analysis, DNA
    Language English
    Publishing date 2016--17
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 187009-9
    ISSN 1097-4172 ; 0092-8674
    ISSN (online) 1097-4172
    ISSN 0092-8674
    DOI 10.1016/j.cell.2016.11.004
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.MG 58: Show issues

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  5. Article: Epigenetics ELSI: Darker Than You Think?

    Joly, Yann / So, Derek / Saulnier, Katie / Dyke, Stephanie O M

    Trends in genetics : TIG

    2016  Volume 32, Issue 10, Page(s) 591–592

    Abstract: Emerging ethical, legal, and social implications (ELSI) scholarship in epigenetics has focused largely on hypothetical issues involving institutional racism, discrimination, and eugenics. To avoid an unwarranted backlash against this promising research ... ...

    Abstract Emerging ethical, legal, and social implications (ELSI) scholarship in epigenetics has focused largely on hypothetical issues involving institutional racism, discrimination, and eugenics. To avoid an unwarranted backlash against this promising research field, we encourage a more balanced ELSI discussion conveying the full spectrum of issues faced by stakeholders.
    Language English
    Publishing date 2016-10
    Publishing country England
    Document type Letter
    ZDB-ID 619240-3
    ISSN 1362-4555 ; 0168-9525 ; 0168-9479
    ISSN (online) 1362-4555
    ISSN 0168-9525 ; 0168-9479
    DOI 10.1016/j.tig.2016.07.001
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 2272: Show issues Location:
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  6. Article ; Online: Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.

    Dyke, Stephanie O M / Connor, Kathleen / Nembaware, Victoria / Munung, Nchangwi S / Reinold, Kathy / Kerry, Giselle / Mbiyavanga, Mamana / Zass, Lyndon / Moldes, Mauricio / Das, Samir / Davis, John M / De Argila, Jordi Rambla / Spalding, J Dylan / Evans, Alan C / Mulder, Nicola / Karamchandani, Jason

    Neuroinformatics

    2022  Volume 21, Issue 1, Page(s) 89–100

    Abstract: We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re- ... ...

    Abstract We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management.
    MeSH term(s) Informed Consent ; Biological Specimen Banks ; Ecosystem ; Genomics
    Language English
    Publishing date 2022-12-15
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ZDB-ID 2111941-7
    ISSN 1559-0089 ; 1539-2791
    ISSN (online) 1559-0089
    ISSN 1539-2791
    DOI 10.1007/s12021-022-09577-4
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    Zs.A 5816: Show issues Location:
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  7. Article ; Online: Controlled Access under Review: Improving the Governance of Genomic Data Access.

    Shabani, Mahsa / Dyke, Stephanie O M / Joly, Yann / Borry, Pascal

    PLoS biology

    2015  Volume 13, Issue 12, Page(s) e1002339

    Abstract: In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we ... ...

    Abstract In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention.
    MeSH term(s) Access to Information ; Animals ; Databases, Nucleic Acid ; Genome ; Genome, Human ; Genomics/methods ; Genomics/trends ; Guidelines as Topic ; Humans ; Models, Organizational ; Quality Improvement ; Social Responsibility
    Language English
    Publishing date 2015-12-31
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2126776-5
    ISSN 1545-7885 ; 1544-9173
    ISSN (online) 1545-7885
    ISSN 1544-9173
    DOI 10.1371/journal.pbio.1002339
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    Zs.A 6193: Show issues Location:
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  8. Article ; Online: Benefits and barriers in the design of harmonized access agreements for international data sharing.

    Saulnier, Katie M / Bujold, David / Dyke, Stephanie O M / Dupras, Charles / Beck, Stephan / Bourque, Guillaume / Joly, Yann

    Scientific data

    2019  Volume 6, Issue 1, Page(s) 297

    Language English
    Publishing date 2019-12-02
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2775191-0
    ISSN 2052-4463 ; 2052-4463
    ISSN (online) 2052-4463
    ISSN 2052-4463
    DOI 10.1038/s41597-019-0310-4
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article: Evolving data access policy: The Canadian context.

    Dyke, Stephanie O M / Saulnier, Katie M / Pastinen, Tomi / Bourque, Guillaume / Joly, Yann

    Facets (Ottawa)

    2016  Volume 1, Issue 1, Page(s) 138–147

    Abstract: In setting up a data access policy to share controlled access data from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely to be ... ...

    Abstract In setting up a data access policy to share controlled access data from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely to be relevant to other researchers sharing data, especially from Canadian projects. We discuss our solutions to the following data-sharing challenges, based on comparative legal and policy analysis: (1) providing access to data to a growing number of researchers; (2) maintaining Canadian privacy standards while sharing controlled access data internationally; (3) freedom of information requests; and (4) providing more incentives for researchers to share pre-publication data.
    Language English
    Publishing date 2016-11-21
    Publishing country Canada
    Document type Journal Article
    ISSN 2371-1671
    ISSN 2371-1671
    DOI 10.1139/facets-2016-0002
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  10. Article ; Online: Registered access: a 'Triple-A' approach.

    Dyke, Stephanie O M / Kirby, Emily / Shabani, Mahsa / Thorogood, Adrian / Kato, Kazuto / Knoppers, Bartha M

    European journal of human genetics : EJHG

    2016  Volume 24, Issue 12, Page(s) 1676–1680

    Abstract: We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other ... ...

    Abstract We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users.
    MeSH term(s) Access to Information ; Databases, Genetic ; Information Dissemination ; Security Measures/organization & administration ; Security Measures/standards
    Language English
    Publishing date 2016-09-28
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/ejhg.2016.115
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