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The Terms of Reference of the Ethics and Confidentiality Committee (ECC)

The Ethics and Confidentiality Committee (ECC) is accountable to the National Information Governance Board for Health and Social Care (NIGB) and has delegated powers from the NIGB to:

  • Undertake the responsibilities of the National Information Governance Board for Health and Social Care under section 251 of the NHS Act 2006 and section 33 D of the Human Fertilisation and Embryology Act 2008. These are to advise the Secretary of State on use of powers provided by section 251 of the NHS Act 2006, and the Human Fertilisation and Embryology Authority in relation to section 33D of the HFE Act 2008 and in particular on:
    • Applications and proposals for use of these powers;
    • Draft regulations made under section 251 of the Act;
    • Proposals to vary or revoke such regulations following the Secretary of State's required annual review of existing provisions; and
    • Inform the NIGB of the decisions it has taken. Consider and advise on ethical issues referred to it by the NIGB and relating to the processing of health or social care information. Bring to the attention of the NIGB any ethical issues which the ECC considers requires the Board's attention and which arise from the exercise of its functions under relevant Acts or otherwise.

The powers under section 251 of the NHS Act 2006 relate to health information in England and Wales. Powers under section 33 D of the Human Fertilization and Embryology Act 2008 relate to all four UK nations. The ECC will make regular reports to the NIGB and contribute to the NIGB Annual Report.

  • The ECC will have 16 members.
  • The ECC will be a quorum with 9 members including the Chair or Deputy Chair, or person designated Chair.
  • The ECC currently meets bi-monthly, but will meet as necessary to deliver its functions.
  • A Deputy Chair will be elected by the ECC.
  • If the Chair is unavailable for a meeting then the Deputy Chair will act as Chair, or should the Deputy Chair be absent also the Chair will ask one of the members to act as Chair or, if necessary, the members present will agree one of their number to act as Chair for that meeting.
  • Failure to attend three or more consecutive meetings without reasonable explanation may result in the removal of a member from the Committee by the NIGB.