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Access to Collections of Data and Materials for Health Research

Access to Collections of Data and Materials for Health Research

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Published by Wellcome Trust
This report was commissioned by the Medical Research Council (MRC) and the Wellcome Trust to review various issues surrounding research access to population-based collections of data and materials in the UK, principally collections that the two organisations fund or have some responsibility for.

The report addresses issues including consent and confidentiality concerns, scientific concerns, proprietary concerns, issues of decision authority and oversight, and some practical considerations.

It was written by William W Lowrance, an independent consultant in health policy and ethics. The views and opinions expressed are the author's own and do not necessarily reflect those of the MRC or the Wellcome Trust.
This report was commissioned by the Medical Research Council (MRC) and the Wellcome Trust to review various issues surrounding research access to population-based collections of data and materials in the UK, principally collections that the two organisations fund or have some responsibility for.

The report addresses issues including consent and confidentiality concerns, scientific concerns, proprietary concerns, issues of decision authority and oversight, and some practical considerations.

It was written by William W Lowrance, an independent consultant in health policy and ethics. The views and opinions expressed are the author's own and do not necessarily reflect those of the MRC or the Wellcome Trust.

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Categories:Types, Research, Science
Published by: Wellcome Trust on Jul 01, 2009
Copyright:Attribution Non-commercial No-derivs

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02/04/2013

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 ACCESS TO COLLECTIONSOF DATA AND MATERIALSFOR HEALTH RESEARCH
 A report to the Medical ResearchCouncil and the Wellcome TrustBy William W Lowrance
 
The Wellcome Trust is anindependent charity whosemission is to foster andpromote research with theaim of improving humanand animal health.The Medical Research Council(MRC) is the UK’s leading publiclyfunded medical researchorganisation. Its aim is to improvehuman health by supportinghigh-quality biomedical research.MRC-funded research has ledto many of the most significantdiscoveries in medical science,both in the UK and worldwide.This report was commissioned by the Medical ResearchCouncil (MRC) and the Wellcome Trust to review variousissues surrounding research access to population-basedcollections of data and materials in the UK. The views andopinions expressed are the author’s own and do notnecessarily reflect those of the MRC or the WellcomeTrust. However, as the report contains valuable materialthat can inform discussions and policy making in this area,it is being made widely available to all interested parties. Available online at www.wellcome.ac.uk/accessreportand www.mrc.ac.uk/research_collection_access
 
1
 Access to Collections of Data and Materials for Health Research MARCH2006
Contents
Preface
3
Executive summary
4
1. The impetus for
6
data sharing
MRC and Wellcome Trust policiesNIH policyOther sources of impetus
2. The collections,
8
and terminology
Sketches of some collections Terminology in this report
3. Basics of data
11
and access
 Access The life stages of dataDegrees of accessibility‘Public data’ and ‘open access’
4. Conditions of access
14
 Agreements Terms of agreementsOpportunities for guidance
5. Consent and
18
confidentiality concerns
ConsentConfidentiality and anonymisationSafe settings and data enclavesLimited data setsNeed for resolution and guidance
6. Scientific concerns
21
Stance and preliminariesScreening of applicants and proposalsControl after access is granted Tending the scientific ethos
7. Territorial and
24
proprietary concerns
Custodians’ vested interestsIntellectual and academic creditCost coverageCollectors’ privilegesInterim exclusivityIntellectual property
8. Decisions on access
27
Who should make what decisions?Oversight and advisory structures The plethora of committeesOversight needs
9. Storage for data
29
sharing
Refining and documenting data The ESRC/UKDA example Archiving biomedical dataRegisters and portals
10. Observations and
31
conclusions
ObservationsConclusions
 Appendix 1
34
People consulted during the project
 Appendix 2
36
 The author

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