Including all voices in international datasharing governance

Jane Kaye, Sharon F. Terry, Eric Juengst, Sarah Coy, Jennifer R. Harris, Don Chalmers, Edward S. Dove, Isabelle Budin-Ljøsne, Clement Adebamowo, Emilomo Ogbe, Louise Bezuidenhout, Michael Morrison, Joel T. Minion, Madeleine J. Murtagh, Jusaku Minari, Harriet Teare, Rosario Isasi, Kazuto Kato, Emmanuelle Rial-Sebbag, Patricia MarshallBarbara Koenig, Anne Cambon-Thomsen

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

Background: Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions: We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

Original languageEnglish (US)
Article number13
JournalHuman Genomics
Volume12
Issue number1
DOIs
StatePublished - Jan 26 2018

Fingerprint

Information Dissemination
Decision Making
Research
Research Personnel
Illegitimacy
Social Responsibility
Compliance
Biomedical Research
Referral and Consultation
Medicine
Technology
Delivery of Health Care

Keywords

  • Data sharing
  • Digital technologies
  • Governance
  • Inclusion
  • International research
  • Public engagement

ASJC Scopus subject areas

  • Molecular Medicine
  • Molecular Biology
  • Genetics
  • Drug Discovery

Cite this

Kaye, J., Terry, S. F., Juengst, E., Coy, S., Harris, J. R., Chalmers, D., ... Cambon-Thomsen, A. (2018). Including all voices in international datasharing governance. Human Genomics, 12(1), [13]. https://doi.org/10.1186/s40246-018-0143-9

Including all voices in international datasharing governance. / Kaye, Jane; Terry, Sharon F.; Juengst, Eric; Coy, Sarah; Harris, Jennifer R.; Chalmers, Don; Dove, Edward S.; Budin-Ljøsne, Isabelle; Adebamowo, Clement; Ogbe, Emilomo; Bezuidenhout, Louise; Morrison, Michael; Minion, Joel T.; Murtagh, Madeleine J.; Minari, Jusaku; Teare, Harriet; Isasi, Rosario; Kato, Kazuto; Rial-Sebbag, Emmanuelle; Marshall, Patricia; Koenig, Barbara; Cambon-Thomsen, Anne.

In: Human Genomics, Vol. 12, No. 1, 13, 26.01.2018.

Research output: Contribution to journalArticle

Kaye, J, Terry, SF, Juengst, E, Coy, S, Harris, JR, Chalmers, D, Dove, ES, Budin-Ljøsne, I, Adebamowo, C, Ogbe, E, Bezuidenhout, L, Morrison, M, Minion, JT, Murtagh, MJ, Minari, J, Teare, H, Isasi, R, Kato, K, Rial-Sebbag, E, Marshall, P, Koenig, B & Cambon-Thomsen, A 2018, 'Including all voices in international datasharing governance', Human Genomics, vol. 12, no. 1, 13. https://doi.org/10.1186/s40246-018-0143-9
Kaye J, Terry SF, Juengst E, Coy S, Harris JR, Chalmers D et al. Including all voices in international datasharing governance. Human Genomics. 2018 Jan 26;12(1). 13. https://doi.org/10.1186/s40246-018-0143-9
Kaye, Jane ; Terry, Sharon F. ; Juengst, Eric ; Coy, Sarah ; Harris, Jennifer R. ; Chalmers, Don ; Dove, Edward S. ; Budin-Ljøsne, Isabelle ; Adebamowo, Clement ; Ogbe, Emilomo ; Bezuidenhout, Louise ; Morrison, Michael ; Minion, Joel T. ; Murtagh, Madeleine J. ; Minari, Jusaku ; Teare, Harriet ; Isasi, Rosario ; Kato, Kazuto ; Rial-Sebbag, Emmanuelle ; Marshall, Patricia ; Koenig, Barbara ; Cambon-Thomsen, Anne. / Including all voices in international datasharing governance. In: Human Genomics. 2018 ; Vol. 12, No. 1.
@article{f24b67b3e4a14c82b8eeedde3d1990f1,
title = "Including all voices in international datasharing governance",
abstract = "Background: Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions: We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.",
keywords = "Data sharing, Digital technologies, Governance, Inclusion, International research, Public engagement",
author = "Jane Kaye and Terry, {Sharon F.} and Eric Juengst and Sarah Coy and Harris, {Jennifer R.} and Don Chalmers and Dove, {Edward S.} and Isabelle Budin-Lj{\o}sne and Clement Adebamowo and Emilomo Ogbe and Louise Bezuidenhout and Michael Morrison and Minion, {Joel T.} and Murtagh, {Madeleine J.} and Jusaku Minari and Harriet Teare and Rosario Isasi and Kazuto Kato and Emmanuelle Rial-Sebbag and Patricia Marshall and Barbara Koenig and Anne Cambon-Thomsen",
year = "2018",
month = "1",
day = "26",
doi = "10.1186/s40246-018-0143-9",
language = "English (US)",
volume = "12",
journal = "Human Genomics",
issn = "1479-7364",
publisher = "Henry Stewart Publications",
number = "1",

}

TY - JOUR

T1 - Including all voices in international datasharing governance

AU - Kaye, Jane

AU - Terry, Sharon F.

AU - Juengst, Eric

AU - Coy, Sarah

AU - Harris, Jennifer R.

AU - Chalmers, Don

AU - Dove, Edward S.

AU - Budin-Ljøsne, Isabelle

AU - Adebamowo, Clement

AU - Ogbe, Emilomo

AU - Bezuidenhout, Louise

AU - Morrison, Michael

AU - Minion, Joel T.

AU - Murtagh, Madeleine J.

AU - Minari, Jusaku

AU - Teare, Harriet

AU - Isasi, Rosario

AU - Kato, Kazuto

AU - Rial-Sebbag, Emmanuelle

AU - Marshall, Patricia

AU - Koenig, Barbara

AU - Cambon-Thomsen, Anne

PY - 2018/1/26

Y1 - 2018/1/26

N2 - Background: Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions: We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

AB - Background: Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions: We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

KW - Data sharing

KW - Digital technologies

KW - Governance

KW - Inclusion

KW - International research

KW - Public engagement

UR - http://www.scopus.com/inward/record.url?scp=85054512218&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85054512218&partnerID=8YFLogxK

U2 - 10.1186/s40246-018-0143-9

DO - 10.1186/s40246-018-0143-9

M3 - Article

C2 - 29514717

AN - SCOPUS:85054512218

VL - 12

JO - Human Genomics

JF - Human Genomics

SN - 1479-7364

IS - 1

M1 - 13

ER -