META-DAC - Managing Ethico-social and Technical issues and Administration of Data Access Committee

Lead Research Organisation: Newcastle University
Department Name: Geography Politics and Sociology

Abstract

In a world where rapid technological progress and an ageing population place ever increasing demands on medical and social care, one of our most potent weapons is the translation into societal benefit of scientific resources embodied in longitudinal cohorts studies and biobanks. Although it is easy to appeal to the simple idea of using these resources wisely, the reality is more challenging. Internationally, this is a major strategic issue for most large-scale data/sample generating biomedical and social studies as well as for their funders, who wish to see an optimal use of and return from their investments. The apparently simple administrative task of granting access to data and biosamples is often far from straightforward because of potential - or actual - conflicts of interest between study participants, data generators, data users, funders, ethico-legal experts, specialist lobby groups and policy developers. For publically funded studies these are all legitimate stakeholders, with different opportunities to express their perspectives. Appropriately balancing these views is a complex process involving understanding of the underlying science as well as the relevant ethical, legal, social and technical issues. Effectively managing extensive and complex data and biosamples requires active and innovative governance and technical oversight of access to data and biosamples.

The METADAC (Managing Ethico-social, Technical issues and Administration Data Access Committee) is a multi-agency multi-study data access structure which will service several of the UK's major cohort studies (1958BC, 1970BC, Millennium BC and Understanding Society) and to provide a scalable mechanism to incorporate additional cohorts in the future (eg. ELSA). The META-DAC will develop, implement and maintain all administrative and technical activities plus policies needed to realise an access mechanism that is fit for purpose given the complex biomedical/social data and samples in question: its primary aim to optimise the use of the scientific resources under its governance. The METADAC is committed to a streamlined, proportionate and responsive form of governance which maintains full regard to the consents and expectations of the study participants who provided the research materials.

Complex decisions about data access are not simply ethical or technical; they go to the heart of the politics of scientific research.

Technical Summary

In a world where rapid technological progress and an ageing population place ever increasing demands on medical and social care, one of our most potent weapons is the translation into societal benefit of scientific resources embodied in longitudinal cohorts studies and biobanks. Complex decisions about data access are not simply ethical or technical; they go to the heart of the politics of scientific research. Effectively managing extensive and complex data and biosamples requires active and innovative governance and technical oversight of access to data and biosamples.

The METADAC (Managing Ethico-social, Technical issues and Administration Data Access Committee) is a multi-agency multi-study data access structure which will service several of the UK's major cohort studies (1958BC, 1970BC, Millennium BC and Understanding Society) and to provide a scalable mechanism to incorporate additional cohorts in the future (eg. ELSA). The META-DAC will develop, implement and maintain all administrative and technical activities plus policies needed to realise an access mechanism that is fit for purpose given the complex biomedical/social data and samples in question: its primary aim to optimise the use of the scientific resources under its governance. The METADAC is committed to a streamlined, proportionate and responsive form of governance which maintains full regard to the consents and expectations of the study participants who provided the research materials.

Planned Impact

Not Applicable

Publications

10 25 50

publication icon
Baselmans BML (2019) Multivariate genome-wide analyses of the well-being spectrum. in Nature genetics

publication icon
Borges MC (2017) Metabolic Profiling of Adiponectin Levels in Adults: Mendelian Randomization Analysis. in Circulation. Cardiovascular genetics

 
Description ESRC invitation only call for the recommissioning of the METADAC.
Amount £374,999 (GBP)
Funding ID ES/S008349/1 
Organisation ESRC Impact Acceleration Account Cambridge 
Sector Academic/University
Country United Kingdom
Start 10/2018 
End 09/2020
 
Description CHIP ME: Citizen health through public private initiatives - Galway 4-5 September 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Particpating in non-traditional research model dialogues with researchers and interested public
Year(s) Of Engagement Activity 2017
URL http://chipme.eu/eng/home.aspx
 
Description Cheltenham Science Festival (invited presentation) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Invited speaker at The Times Cheltenham Science Festival, speaking in the evening to nearly 100 attendees with co-speaker Ian Craddock. Talk covered ethics and governance in bioscience and time was reserved in the schedule for a lively question and answer session moderated by a skilled Chair. Members of the public asked questions about Longitudinal (Cohort) studies and about care.data plans for linkage of NHS data for use in health research.
Year(s) Of Engagement Activity 2015
URL http://www.cheltenhamfestivals.com/science/
 
Description EASST meeting - Epistemic and non-epistemic values driving data sharing in practice for data and sample access 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The presentation on the values driving data sharing in practice, and the METADAC model, led to discussion of the drivers of data sharing with the conference attendees, and sharing the METADAC model more widely.
Year(s) Of Engagement Activity 2016
URL http://www.sts2016bcn.org/
 
Description EU biobank week Vienna - the METADAC model. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The METADAC model for data access was presented by Prof Madeleine Murtagh and Dr Stephanie Roberts. The audience were primarily scientists and clinicians involved with or setting up biobanks and there were many questions for further discussion at the end. Questions covered practicalities such as how we achieve the speed of decisions and ethico-legal considerations like how we deal with incidental findings.
Year(s) Of Engagement Activity 2016
URL http://europebiobankweek.eu
 
Description Europe Biobank Week: Challenges for data sharing: old governance meets new technologies 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on data access challenges and decision-making was given to ~250 atttendees of the Europe biobank week conference. Questions and discussions with audience members followed.
Year(s) Of Engagement Activity 2016
URL https://mail.google.com/mail/u/1/#inbox?compose=15ac8b0b8bc64451
 
Description Inviited seminar, Telethon Kids Institute and Raine Birth Cohort, Australia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The METADAC model was presented to 10 senior researchers from the Telethon Kids Institute and Raine Birth Cohort Study. Discussion & plans for future activity followed.
Year(s) Of Engagement Activity 2016
 
Description Social and epidemiological issues in big data - data sharing in population sciences 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited presentation on data sharing and big data at the Department of Public Health, Adelaide, Australia. The METADAC model was shared with academics from the Department and plans for future work were made.
Year(s) Of Engagement Activity 2016
 
Description The METADAC model - Invited seminar Melbourne 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited seminar to present the METADAC model for data access at the Murdoch Children's Research Institute Melbourne Australia. The audience was senior researchers from the Institute and there was lively discussion following the presentation and great interest in how METADAC is addressing the challenges of data sharing, e.g. incidental findings.
Year(s) Of Engagement Activity 2016