Chair of Access Review Committee (ARC)

Genomics England is a global leader in enabling genomic medicine and research, focused on creating a world where everyone benefits from genomic healthcare. Building on the 100,000 Genomes Project, we support the NHS’s world-first national whole genome sequencing service and run the growing National Genomic Research Library, alongside delivering numerous major genomics initiatives. By connecting research and clinical care at national scale, we enable immediate healthcare benefits and advances for the future.

Our mission is to provide the evidence and digital systems so that by 2035 genomics could play a role in up to half of all healthcare interactions, whilst securing the UK’s position as the best place to discover, prove and benefit from genomic innovations. We are accelerating our impact and working with patients, doctors, scientists, government and industry to improve genomic testing, and help researchers access the health data and technology they need to make new medical discoveries and create more effective, targeted medicines for everybody.

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.
• Working 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.
• Ensuring 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 include:

• Leading on steering and reviewing the progress and success of the ARC, including 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.
• Acting to consider the interests of Genomics England’s communities, including participants/patients providing data to the NGRL; the general public; employees, scientists and clinicians engaged in genomic research or clinical care; medical charities; and other potential collaborators.
• Ensuring rules, policies and procedures relevant to the work of the ARC are adhered to where applicable.
• Supporting development and review of Genomics England policies relating to data ethics and information governance, particularly where relevant to the NGRL.
• Chairing the ARC meetings according to ARC’s Terms of Reference; and engaging with other Genomics England committees as required.
• Supporting and promoting active involvement of ARC members from the Participant Panel in the ARC’s discussion and decision-making.
• Championing equality and diversity in decision-making, ensuring ARC members and potential members are treated fairly and equally.

Qualifications:

Essential:

• Extensive senior-level experience of discovery and/or translational patient focussed research, with a UK academic, NHS or industry background, and/or experience from a sector with extensive data governance experience.
• A strong track record of working with research participants, clinicians, and academic and commercial researchers.
• Experience of and passion for including participants and patients in your work and in decision-making processes.
• Previous experience of Chairing and leading boards, committees or working groups.
• Strong leadership, communication and diplomatic skills.
• Ability to work with discretion, impartiality and fairness.
• Strategic and forward thinking, able to address challenges, provide innovative and well considered advice, and follow through on necessary actions.
• Based primarily in the UK.

Desirable:

• Familiarity and experience working on areas relevant to the remit of the ARC.
• Knowledge of industry/academic partnerships and knowledge transfer.
• Understanding of the importance of various forms of research activities and outputs in the UK genomics ecosystem.

Additional Information:

The role is expected to report into the Genomics England Board via the Chief Ethics & Engagement Officer (CEEO). The role holder is expected to work within the Research Ethics Committee (REC) conditions of approval, and the expectations set by the Executive Leadership Team.

Term of appointment: The appointment shall be for 3 years, with a performance review at the end of each year. The term of appointment is renewable for one further term of 3 years, with annual reviews/check-ins.

Time commitment for the role is expected to be around 16-19 days per annum, including preparation ahead of ARC meetings, monthly meetings with ARC Committee Manager, and ensuring continuity of ARC business.

This role is remunerated at £7883.00/year (paid monthly). All reasonable expenses that arise from attending face-to-face meetings will be reimbursed, subject to Genomics England’s expenses policy.

To apply for the role, please share your CV and a personal statement outlining why you are interested and consider yourself suitable for the role via the ‘apply’ route and follow the steps in the vacancy on our job listings board, or directly to the Talent Acquisition team.

Closing date for applications: 22nd September 2026 23:59. Candidates selected for interview will be contacted: End of September 2026. Anticipated panel interviews: 15th-22nd October 2026. Start date: Mid-November 2026. First ARC meeting: 9th December 2026.

Genomics England is actively committed to providing and supporting an inclusive environment that promotes equity, diversity and inclusion best practice both within our community and in any other area where we have influence.