Chair of Access Review Committee (ARC)

Job description

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). Support and promote active involvement of ARC members from the Participant Panel in the ARC’s discussion and decision-making. Champion equality and diversity in decision-making, and ensure ARC members and potential members, are treated fairly and equally, and their views and opinions considered, regardless of gender, race, disability, sexual orientation, religion/belief or age. 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. For example, data governance and access, discovery research using genomic data, Secure Data Environments, high-performance compute usage and equity and diversity in research 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 For more information including the foreword from Dr Natalie Banner, our Chief Ethics and Engagement Officer (CEEO) please click to open: Access Review Committee Chair candidate briefing pack Appointment/terms 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 (in particular the CEO and CEEO). 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 and support available The time commitment for the role is expected to be around 16-19 days per annum Preparation ahead of ARC meetings (expected to be minimum 4 per year), including agenda reviews, reading pre-reads, preparing other ARC members for the meetings and soliciting input and feedback from any and all ARC members Monthly 1-hour meetings with ARC Committee Manager and appropriate members of Genomics England. Chair’s actions and other out-of-session items and ensuring continuity of ARC business and adequate consideration of agenda items for upcoming meetings Genomics England provides secretariat support via the ARC Committee Manager function (preparing pre-reads, providing Genomics England with updates when required, agenda item suggestions and other secretarial support) Reviewing of commercial and academic applications through an online portal (currently Jira Service Desk), reviewing comments made on the portal by ARC members and ensuring timely progression of the review process and providing ARC decisions to applicants. Remuneration This role is remunerated at £7883.00/year (paid monthly). The amount is set according to UK Government guidelines at the equivalent level of a Non-Executive Director and will be discussed upon application. All reasonable expenses that arise from attending face to face meetings will be reimbursed, subject to Genomics England’s expenses policy. How to apply, timeline, vetting and privacy notice 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, via: 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 External candidates will be subject to vetting, including searching of information in the public domain. Genomics England Privacy Notice: Equal opportunities and our commitment to a diverse and inclusive workplace 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. We are proud of our diverse community where everyone can come to work and feel welcomed and treated with respect regardless of any disability, ethnicity, gender, gender identity, religion, sexual orientation, or social background. Genomics England’s policies of non-discrimination and equity and will be applied fairly to all people, regardless of age, disability, gender identity or reassignment, marital or civil partnership status, being pregnant or recently becoming a parent, race, religion or beliefs, sex or sexual orientation, length of service, whether full or part-time or employed under a permanent or a fixed-term contract or any other relevant factor. Genomics England does not tolerate any form of discrimination, harassment, victimisation or bullying at work. Such behaviour undermines our mission and core values and diminishes the dignity, respect and integrity of all parties. Our People policies outline our commitment to inclusivity. We aim to remove barriers in our recruitment processes and to be flexible with our interview processes. Should you require any adjustments that may help you to fully participate in the recruitment process, we encourage you to discuss this with us. Culture We have four key behaviours that represent what we would like Genomics England to feel like and the culture we want to encourage, in order for us to achieve our mission. These behaviours help us all work well together, deliver on our outcomes, celebrate our successes and share feedback with each other. You can read about these and other aspects of our culture here Culture | Genomics England 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. Behind the Healthcare and Research outcomes, Genomics England delivers through designing, developing and operating complex healthcare software systems. We're on the cusp of big changes with the real prospect of genomics becoming the fabric of everyday healthcare through the lifetime – from birth to old age.