دورية أكاديمية
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Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.

التفاصيل البيبلوغرافية
العنوان: Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.
المؤلفون: Murtagh MJ; Newcastle University, Newcastle upon Tyne, UK. Madeleine.Murtagh@newcastle.ac.uk., Blell MT; University of Cambridge, Cambridge, UK., Butters OW; Newcastle University, Newcastle upon Tyne, UK., Cowley L; Newcastle University, Newcastle upon Tyne, UK., Dove ES; University of Edinburgh, Edinburgh, UK., Goodman A; University College London Institute of Education, London, UK., Griggs RL; University of Bristol, Bristol, UK., Hall A; PHG Foundation, Cambridge, UK., Hallowell N; University of Oxford, Oxford, UK., Kumari M; University of Essex, Colchester, UK., Mangino M; King's College London, London, UK., Maughan B; King's College London, London, UK., Mills MC; University of Oxford, Oxford, UK., Minion JT; Newcastle University, Newcastle upon Tyne, UK., Murphy T; University College London Institute of Education, London, UK., Prior G; NatCen, Brentwood, London, UK., Suderman M; University of Bristol, Bristol, UK., Ring SM; University of Bristol, Bristol, UK., Rogers NT; University College London, London, UK., Roberts SJ; Newcastle University, Newcastle upon Tyne, UK., Van der Straeten C; Imperial College London, London, UK.; Ghent University Hospital, Ghent, Belgium., Viney W; Goldsmiths, University of London, London, UK., Wiltshire D; UK Data Archive, University of Essex, Colchester, UK., Wong A; University College London, London, UK., Walker N; NIHR Bioresource, Cambridge, UK., Burton PR; Newcastle University, Newcastle upon Tyne, UK.
المصدر: Human genomics [Hum Genomics] 2018 Apr 26; Vol. 12 (1), pp. 24. Date of Electronic Publication: 2018 Apr 26.
نوع المنشور: Journal Article; Research Support, Non-U.S. Gov't
اللغة: English
بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 101202210 Publication Model: Electronic Cited Medium: Internet ISSN: 1479-7364 (Electronic) Linking ISSN: 14739542 NLM ISO Abbreviation: Hum Genomics Subsets: MEDLINE
أسماء مطبوعة: Publication: 2012- : London : BioMed Central
Original Publication: London : Henry Stewart Publications, c2003-
مواضيع طبية MeSH: Big Data*, Biomedical Research/*ethics , Genomics/*ethics , Information Dissemination/*ethics, Biomedical Research/economics ; Databases, Genetic/economics ; Databases, Genetic/ethics ; Genotype ; Humans
مستخلص: 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.
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معلومات مُعتمدة: MR/P023444/1 United Kingdom MRC_ Medical Research Council; 209829/Z/17/Z United Kingdom WT_ Wellcome Trust; MR/N01104X/2 United Kingdom MRC_ Medical Research Council; Grant Number: MR/N01104X/1 United Kingdom MRC_ Medical Research Council; MR/N01104X/1 United Kingdom MRC_ Medical Research Council; MR/K006525/1 United Kingdom MRC_ Medical Research Council; MR/K007017/1 United Kingdom MRC_ Medical Research Council; G9815508 United Kingdom MRC_ Medical Research Council; United Kingdom WT_ Wellcome Trust; MC_UU_12013/2 United Kingdom MRC_ Medical Research Council; MC_UU_00011/5 United Kingdom MRC_ Medical Research Council
فهرسة مساهمة: Keywords: Data Access Committee (DAC); Data access; Data ethics; Data governance; Ethnography; Governance; Interdisciplinarity; Participant involvement; Qualitative research
تواريخ الأحداث: Date Created: 20180427 Date Completed: 20190130 Latest Revision: 20231113
رمز التحديث: 20240829
مُعرف محوري في PubMed: PMC5918902
DOI: 10.1186/s40246-018-0154-6
PMID: 29695297
قاعدة البيانات: MEDLINE
الوصف
تدمد:1479-7364
DOI:10.1186/s40246-018-0154-6