Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure

Madeleine J. Murtagh; Mwenza T. Blell; Olly W. Butters; Lorraine Cowley; Edward S. Dove; Alissa Goodman; Rebecca L. Griggs; Alison Hall; Nina Hallowell; Meena Kumari; Massimo Mangino; Barbara Maughan; Melinda C. Mills; Joel T. Minion; Tom Murphy; Gillian Prior; Matthew Suderman; Susan M. Ring; Nina T. Rogers; Stephanie J. Roberts; Catherine Van Der Straeten; Will Viney; Deborah Wiltshire; Andrew Wong; Neil Walker; Paul R. Burton

doi:10.1186/s40246-018-0154-6

Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure

Madeleine J. Murtagh^*, Mwenza T. Blell, Olly W. Butters, Lorraine Cowley, Edward S. Dove, Alissa Goodman, Rebecca L. Griggs, Alison Hall, Nina Hallowell, Meena Kumari, Massimo Mangino, Barbara Maughan, Melinda C. Mills, Joel T. Minion, Tom Murphy, Gillian Prior, Matthew Suderman, Susan M. Ring, Nina T. Rogers, Stephanie J. RobertsCatherine Van Der Straeten, Will Viney, Deborah Wiltshire, Andrew Wong, Neil Walker, Paul R. Burton

^*Corresponding author for this work

Social Genetic & Developmental Psychiatry

Research output: Contribution to journal › Article › peer-review

37 Citations (Scopus)

Abstract

Background: Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK's longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. Methods: This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and 'omic' data and samples from five UK longitudinal studies. Findings: Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

Original language	English
Article number	24
Journal	Human Genomics
Volume	12
Issue number	1
DOIs	https://doi.org/10.1186/s40246-018-0154-6
Publication status	Published - 26 Jan 2018

Keywords

Data access
Data Access Committee (DAC)
Data ethics
Data governance
Ethnography
Governance
Interdisciplinarity
Participant involvement
Qualitative research

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1186/s40246-018-0154-6

Cite this

Murtagh, M. J., Blell, M. T., Butters, O. W., Cowley, L., Dove, E. S., Goodman, A., Griggs, R. L., Hall, A., Hallowell, N., Kumari, M., Mangino, M., Maughan, B., Mills, M. C., Minion, J. T., Murphy, T., Prior, G., Suderman, M., Ring, S. M., Rogers, N. T., ... Burton, P. R. (2018). Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure. Human Genomics, 12(1), Article 24. https://doi.org/10.1186/s40246-018-0154-6

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title = "Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure",

abstract = "Background: Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK's longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. Methods: This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and 'omic' data and samples from five UK longitudinal studies. Findings: Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.",

keywords = "Data access, Data Access Committee (DAC), Data ethics, Data governance, Ethnography, Governance, Interdisciplinarity, Participant involvement, Qualitative research",

author = "Murtagh, {Madeleine J.} and Blell, {Mwenza T.} and Butters, {Olly W.} and Lorraine Cowley and Dove, {Edward S.} and Alissa Goodman and Griggs, {Rebecca L.} and Alison Hall and Nina Hallowell and Meena Kumari and Massimo Mangino and Barbara Maughan and Mills, {Melinda C.} and Minion, {Joel T.} and Tom Murphy and Gillian Prior and Matthew Suderman and Ring, {Susan M.} and Rogers, {Nina T.} and Roberts, {Stephanie J.} and {Van Der Straeten}, Catherine and Will Viney and Deborah Wiltshire and Andrew Wong and Neil Walker and Burton, {Paul R.}",

year = "2018",

month = jan,

day = "26",

doi = "10.1186/s40246-018-0154-6",

language = "English",

volume = "12",

journal = "Human Genomics",

issn = "1473-9542",

publisher = "Henry Stewart Publications",

number = "1",

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Murtagh, MJ, Blell, MT, Butters, OW, Cowley, L, Dove, ES, Goodman, A, Griggs, RL, Hall, A, Hallowell, N, Kumari, M, Mangino, M, Maughan, B, Mills, MC, Minion, JT, Murphy, T, Prior, G, Suderman, M, Ring, SM, Rogers, NT, Roberts, SJ, Van Der Straeten, C, Viney, W, Wiltshire, D, Wong, A, Walker, N & Burton, PR 2018, 'Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure', Human Genomics, vol. 12, no. 1, 24. https://doi.org/10.1186/s40246-018-0154-6

TY - JOUR

T1 - Better governance, better access

T2 - Practising responsible data sharing in the METADAC governance infrastructure

AU - Murtagh, Madeleine J.

AU - Blell, Mwenza T.

AU - Butters, Olly W.

AU - Cowley, Lorraine

AU - Dove, Edward S.

AU - Goodman, Alissa

AU - Griggs, Rebecca L.

AU - Hall, Alison

AU - Hallowell, Nina

AU - Kumari, Meena

AU - Mangino, Massimo

AU - Maughan, Barbara

AU - Mills, Melinda C.

AU - Minion, Joel T.

AU - Murphy, Tom

AU - Prior, Gillian

AU - Suderman, Matthew

AU - Ring, Susan M.

AU - Rogers, Nina T.

AU - Roberts, Stephanie J.

AU - Van Der Straeten, Catherine

AU - Viney, Will

AU - Wiltshire, Deborah

AU - Wong, Andrew

AU - Walker, Neil

AU - Burton, Paul R.

PY - 2018/1/26

Y1 - 2018/1/26

N2 - Background: Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK's longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. Methods: This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and 'omic' data and samples from five UK longitudinal studies. Findings: Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

AB - Background: Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK's longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. Methods: This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and 'omic' data and samples from five UK longitudinal studies. Findings: Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

KW - Data access

KW - Data Access Committee (DAC)

KW - Data ethics

KW - Data governance

KW - Ethnography

KW - Governance

KW - Interdisciplinarity

KW - Participant involvement

KW - Qualitative research

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DO - 10.1186/s40246-018-0154-6

M3 - Article

C2 - 29695297

AN - SCOPUS:85053014914

SN - 1473-9542

VL - 12

JO - Human Genomics

JF - Human Genomics

IS - 1

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ER -

Better governance, better access: Practising responsible data sharing in the METADAC governance infrastructure

Abstract

Keywords

UN SDGs

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