Managing Ethico-social and Technical issues and Administration Data Access Committee

D2K Members

Professor Madeleine Murtagh, Professor Paul Burton

What is METADAC?

The METADAC infrastructure (Managing Ethico-social, Technical and Administrative issues in Data ACcess) hosts a data access committee (the METADAC Access Committee) which governs access to the complex and sensitive genotypic and phenotypic data and biological samples generated by several longitudinal studies in the UK and acts as an advice and appeals committee to one other. METADAC is the only independent, multi-study UK data and sample access infrastructure. METADAC provides access governance for the following studies:

  • 1970 birth cohort (BCS70)
  • English Longitudinal Study of Ageing (ELSA)
  • Millennium Cohort Study (MCS)
  • 1958 Birth Cohort (1958 BC)
  • Natsal
  • Understanding Society (UKHLS)
  • UK Twins (Advisory and Appeals)

The Committee develops, implements and maintains all administrative and technical activities as well as policies needed to provide governance for access to the complex and sensitive biomedical and social data and samples. METADAC also has a wider remit to engage with potential researchers to promote use of the data, review current issues affecting data access and promote good practice and effective policies.

The METADAC also provides an expert forum for discussion of new, complex or difficult issues in data governance. The Twins UK study has a separate application approval route but can refer applications to METADAC for discussion should any issues arise that require expert discussion.

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

User Engagement and Training

METADAC works iteratively with applicants to make their applications ready for approval and provides guidance, training and discussion on how to write a strong application that meets all technical and ethical requirements for approval.

Iterative work with METADAC applicants on societal and participant interests in their research and on writing project summaries for these groups is a core part of METADAC’s engagement with researchers and constantly informs METADAC’s guidance on the skill of presenting a proposal in plain language that participants and the public can engage with.

Contact and Secretariat

Dr. Stephanie Roberts