Chair of Access Review Committee (ARC)

About this role

The ARC Chair will take an engaged role in: Effectively fulfilling the remit of the ARC, demonstrating appropriate decisions are being given to data access requests (in line with Genomics England’s generic NHS REC approval) while ensuring the process is robust and streamlined. Work with the Committee Manager, the Research Management team and the Ethics team to agree agendas for Committee meetings, supporting the preparation of pre-read documents, reviewing minutes.

Ensure ARC members are able to deliver on the requirements of their membership, managing (actual or perceived) conflicts of interest of members, asking members to recuse themselves as needed, and escalating any concerns to the Committee Manager as required. Ensuring appropriate representation at ARC meetings, that quorum is met for decision-making, and engaging with the committee manager as and when new members need to be recruited.

Identifying and leading discussion on emerging issues of data governance and access in relation to the management and security of the Genomics England Research Environment. Ensuring continuous improvement of the structure and operations of ARC to support the expansion of the NGRL and Genomics England’s research endeavors. Specific responsibilities for the Chair Alongside key working relationships at Genomics England (Chief Ethics & Engagement Officer, Committee Manager, Director of Ethics, Director of Scientific Impact & Partnerships (SIP), the Research Management team), The ARC Chair will: Lead on steering and reviewing the progress and success of the ARC, including leading on: Refreshing the ARC model and strategy Developing and chairing an effective system for reviewing and monitoring data access approvals and appropriate use of NGRL data Ensuring effective ways of working, communication and approval pathways for ARC members Act to consider the interests of Genomics England’s communities, including participants/patients providing data to the NGRL; the general public (given the publicly funded nature of Genomics England); employees, scientists and clinicians engaged in genomic research or clinical care; medical charities; and other potential collaborators.

Ensure rules, policies and procedures relevant to the work of the ARC are adhered to where applicable (e.g., Genomics England’s Data Release Policy, Airlock policy) Support development and review of Genomics England policies relating to data ethics and information governance, particularly where relevant to the NGRL. Chair the ARC meetings according to ARC’s Terms of Reference; and engage with other Genomics England committees as required, most notably the Science Advisory Committee (SAC), the Participant Panel, the Ethics Advisory Committee (EAC), the Airlock Committee and the Ethics & Data Protection Group (EDPG).