Chair of Access Review Committee (ARC) United Kingdom

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.

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.

Qualifications

• Extensive senior-level experience of discovery and/or translational patientfocussedresearch, with a UK academic, NHS or industry background, and/orexperiencefrom a sector with extensive data governance experience
• Astrongtrack recordof 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
• PreviousexperienceofChairing and leading boards,committeesor working groups
• Strong leadership,communicationand diplomatic skills
• Ability to work with discretion,impartialityand 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
• 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-performancecomputeusageandequity 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
• 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.

Screening Questions

Do you hold the current right to work in the UK?

• Yes
• No

Please give details of your current right to work – type and length.

Will you now or in the future need a visa or work permit in order to work in the UK?

• Yes
• No

What is your notice/availability to start a new role?

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