Participant Panel Terms of Reference Date: 24/06/2026

Table of Contents

Table of Contents	1

1. ​Purpose and remit	2

2. Roles and responsibilities	2

3. Eligibility and appointment process	3

4. Panel ​​​​​​Activities	4

5. Expectations of members	6

6. Term of office	7

7. Meetings, reporting and quorum	8

8. Remuneration and expenses	8

9. Complaints	9

10. Review	9

11. Authority	9

1. ​Purpose and remit

The Participant Panel ("the Panel") is a group of members of the public who have consented to donate their data to contribute to research in the National Genomics Research Library (NGRL) to improve the diagnosis and treatment of health conditions.

Panel members bring their lived experiences as research participants or as the immediate family member of someone who is a research participant to advise Genomics England on its priorities and the decisions it makes about the data held in the NGRL. The Panel supports Genomics England to listen to and understand the diverse perspectives of people and their families as research participants. It also works collaboratively with Genomics England to build public confidence in its role as a trustworthy steward of people’s data.

The Panel is an advisory body to the Genomics England Board. Its remit is to:

hold Genomics England to account to ensure that it holds safely the data about participants in the NGRL and that the data is used for the public good and is compatible with the terms of the consent given.

help Genomics England consider the needs and priorities of participants in its work, including the processes it adopts as well as the design and delivery of its programmes and services.

continue to pursue a clinical diagnosis or research findings for all those eligible to receive them, including 100,000 Genomes Project participants and their families, and ensure that all legacy cohorts continue to benefit from advances in technology.

provide advice to Genomics England on any aspect of its activities, upon request, drawing on Panel members’ lived experience

champion, and facilitate where possible, patient and public involvement and engagement in genomics-based health research using the NGRL.

Although individual Panel members’ lived experiences of NHS care can inform their advice to Genomics England where applicable, Genomics England does not directly influence NHS decisions about clinical care. This means that it is outside of the remit of the Panel to influence decision making about NHS services or clinical practice.

2. Roles and responsibilities

The Participant Panel membership will be comprised of the following roles:

Chair

Two Vice-chairs, for rare conditions and cancer

Up to around 25 members (including the Chair and Vice-chairs)

The Participant Panel is led by the Chair and Vice-chairs (“Panel Leadership”), who are office holders appointed by the Genomics England Board. The Chair and Vice-chairs must be eligible to be a Panel member.

The responsibilities for the Chair and Vice-chairs are set out in their role descriptions. These include working collaboratively with Genomics England and the Panel to agree the Panel’s priorities, and to oversee delivery of those priorities. The Panel Leadership will agree the quarterly Panel meeting agenda with the Secretariat at Genomics England, who are members of staff at Genomics England. The Panel Leadership is also responsible for facilitating productive, inclusive discussions amongst Panel members. This includes an induction process for new Panel Members into the existing Panel.

The Chair will be invited to a meeting of the Genomics England Board once a year to discuss the Panel’s activities. The Chair also attends the NHS Genomic Medicine Service People and Communities Forum meetings.

The Secretariat to the Participant Panel is provided by the Engagement Team at Genomics England, specifically comprising:

the Committee Manager for the Participant Panel; and

the Engagement and Public Partnerships Director.

The Secretariat manages all Panel business and facilitates any engagement between the Panel and Genomics England employees. The Secretariat is responsible for maintaining information on Genomics England’s website about the Participant Panel for participants and the wider public, and for managing correspondence from Genomics England employees and from other organisations with the Panel.

The Chief Engagement and Ethics Officer is the responsible member of the Genomics England Executive Leadership Team for the Participant Panel, ensuring their insights and experiences help shape how Genomics England engages with participants and earn and sustain their trust.

Key responsibilities include:

supporting and championing the Participant Panel’s role and strategy

providing coordination and secretariat functions for the Participant Panel, Access Review Committee and Ethics Advisory Committee

3. Eligibility and appointment process

To be eligible to join the Participant Panel, an applicant must have had the consent conversation to donate their genomic data, or been involved in the consent conversation to donate the data of an immediate family member, to contribute to research happening in the NGRL. This does not mean that applicants will necessarily have received a diagnosis or further information about their health condition, if applicable, or about the health condition of the person they care for.

This includes people who have had whole genome sequencing as part of an NHS diagnostic process as well as from a wide range of research programmes.

If a Panel member has been involved in the consent conversation for someone else, this may have been as the carer of someone who is part of the 100,000 Genomes Project or the NHS Genomic Medicine Service, or as the parent of a child who is participating in the Generation Study.

Genomics England will check that people who apply to join the Participant Panel satisfy the above criteria.

The Chair, Vice-chairs and Panel members shall be appointed in line with the principles that apply to all of Genomics England’s committees and in an open, fair and equitable manner. The selection process will involve representatives of the Participant Panel and Genomics England. Specifically:

The Chair and Vice-chairs are identified through a competitive recruitment process run by Genomics England and appointed by the Genomics England Board.

Members of the Participant Panel are identified by an open call for expressions of interest. They are appointed by the Chair and the Engagement and Public Partnerships Director.

On appointment, new Panel members will sign an appointment letter issued by Genomics England. The Chair and Vice-chairs also sign appointment letters for their specific roles.

4. Panel ​​​​​​Activities

Panel member activities all require Panel members to contribute to discussions that take place from the perspective of someone who has consented for their data, or the data of someone they care for, to be held in the National Genomic Research Library.

The Panel expects to be kept updated on Genomics England’s progress towards its mission and its strategic programmes to enable this.

Core activities in which Panel members will participate include:

regular attendance at and contribution to quarterly Participant Panel meetings;

preparation for meetings by reading and assessing meeting papers;

opportunities to participate in knowledge-sharing sessions with Genomics England staff and its partners;

providing written feedback on issues or papers as requested by Genomics England; and

undertaking agreed tasks between meetings.

Subject to Panel members’ individual preferences and at the request of Genomics England, there are also opportunities to represent the Participant Panel at events hosted by Genomics England or key partners within the health research ecosystem.

Participant Panel members may also be asked to contribute to Genomics England communications to bring their perspectives on areas of Genomics England’s work or on important topics for participants.

Panel members represent the research participant community on the following advisory committees that report to the Genomics England Board:

Access Review Committee

Ethics Advisory Committee

Research Network Committee

Each committee is governed by its respective Terms of Reference. When a vacancy for a Panel member arises on one of these committees, the Panel Chair will invite expressions of interest from all Panel members and nominate one (or more, where applicable) suitable candidate(s). The Chair of the relevant committee will confirm the appointment of the Panel member.

Each Panel member may serve as a representative on only one Genomics England committee at a time. Representatives remain in post until their committee term ends or their Panel membership ends, whichever occurs first.

Panel representatives are responsible for acting as a liaison between their respective committees, sharing information on deliberations, decisions and approvals. This includes reporting relevant issues or concerns from these committees to the Participant Panel and its Chair. Where necessary, the Panel Chair may escalate matters to the Genomics England Board.

For longer-term initiatives, Genomics England may establish time-limited working groups with Participant Panel member involvement on specific subjects. Working groups may involve additional online meetings and the review and discussion of written materials, as agreed with Genomics England. Working groups will have terms of reference to clarify their remit, expected outputs, and intended impact. Support for these activities will be provided by the Committee Manager for the Participant Panel or another member of Genomics England, as required. Panel members may sit on one committee and multiple working groups if required, so long they do not exceed the maximum activity of 14 days per year.

On occasion Genomics England may also ask one or more Panel members to join a Public or Patient Advisory Group for an external organisation collaborating with Genomics England on a research study. This would be considered within a Panel member’s funded activity time.

From time to time, the Panel may be invited to participate in recruitment exercises for senior posts at Genomics England or the leadership of its advisory committees. Panel members’ input is considered alongside input from other key stakeholders.

The Participant Panel may also be asked to ensure that participant community interests are represented in the induction process for new Genomics England employees. This may include enabling new staff to attend a Panel meeting or facilitating introductory meetings between new employees and Panel members.

5. Expectations of members

Panel members can be based anywhere within the UK.

As representatives of much larger communities of research participants, Panel members have a responsibility to spend sufficient time on their role to ensure their contribution is impactful. Genomics England anticipates this to be in the region of eight days (or 56 hours) per year, including the four quarterly Panel meetings, if possible. There is the opportunity for Panel members to commit more time, subject to their personal circumstances and preferences, up to a total of 14 days (or 98 hours) per year.

Participants must often balance their own and/or their family’s health issues and work commitments, and these naturally take priority. Temporary absences can be agreed with the Panel Chair, should a member be unable to engage with the Panel for personal reasons.

Panel members shall, in conducting all their duties in accordance with these Terms of Reference, act in a way that they consider is in good faith and aligned with Genomics England's vision and mission.

Members should declare any potential conflicts of interest in being a member of the Participant Panel, as well as potential conflicts that may arise in advising on specific items brought to the Participant Panel. Genomics England reserves the right to publish these declarations of interest on its website in the interest of full transparency.

Genomics England is a publicly funded body, and the Panel is here to represent the whole community of people whose data it looks after. Panel members are therefore expected to uphold the seven principles of public life (‘Nolan Principles’) whilst serving on the Panel. Further details can be found here: https://www.gov.uk/government/publications/the-7-principles-of-public-life/the-7-principles-of-public-life--2

6. Term of office

Panel members serve on the Panel for three years, with a possibility of extension for up to three further years with permission of the Chair and the Engagement and Public Partnerships Director. A Panel member may step down at any time before their term finishes, by contacting the Chair or the Secretariat at Genomics England.

The terms of office for the Chair and Vice-chairs of the Panel are also three years from the date of appointment, with the possibility of one further term of three years following a successful review conducted by the Engagement and Public Partnerships Director in collaboration with the Panel.

If a Chair or Vice-chair is appointed to the role during a second term as a Panel member, their tenure in the leadership role will be limited to a single term of up to 3 years, which must be completed within 9 years of joining the Panel.

A Panel member will be thanked for their contribution and asked to step down from the Panel if a Panel member:

(i) fails to attend the majority of at least two of three consecutive quarterly Participant Panel meetings of which four months’ written notice has been given, unless the Chair is satisfied that the absence was due to a reasonable cause; or

(ii) fails to contribute between meetings when invited to participate, for example not replying to or engaging with direct requests from the Committee Manager – Participant Panel, unless the Chair is satisfied that this lack of contribution was due to a reasonable cause.

Unless the Chair and Engagement and Public Partnerships Director agree otherwise, a Panel member’s appointment may also be ended if they cease to have an involvement with Genomics England, for example by withdrawing their data or the data of the person they care from the NGRL.

If a Panel member breaches the expectations of members set out in these Terms of Reference or in their appointment letter, the Chair and Engagement and Public Partnerships Director may issue a warning, noting that continued or repeated breaches may result in the Panel member being asked to step down.

Where a breach is considered serious, or where a Panel member deliberately or repeatedly breaches the expectations set out in these Terms of Reference or appointment letter, the Panel member may be asked to stand down with immediate effect at the request of the Panel Chair and Engagement and Public Partnerships Director .

7. Meetings, reporting and quorum

The Participant Panel holds a full day meeting four times a year at the Genomics England office in Canary Wharf in March, June, September and December.

Attendance in person is preferred, but members may also join virtually to accommodate those whose disability, caring responsibilities, or other circumstances prevent travel

The Secretariat is responsible for calling the meeting, organising meeting dates and providing all necessary support. A minimum of four months’ notice must be given for a quarterly Panel meeting.

The meeting will be considered quorate when a majority of members are in attendance which must include the Chair or one of the Vice-chairs. No formal Panel meeting may take place without the Secretariat.

In the absence of the Chair, a Vice-chair shall run the meeting.

Panel members, the Secretariat, the Chief Engagement and Ethics Officer and the Chief Executive Officer shall have the right to attend meetings. Other Genomics England staff and external guests will be invited by the Secretariat to attend for all or part of any meeting as and when required.

It is expected that members of the Panel will have a wide variety of views. When a decision has to be made, it is aimed to do so via consensus wherever possible. If consensus cannot be reached, the Panel Chair, in consultation with the Vice-chairs and Secretariat, will make a decision or determine the next steps, ensuring that minority views are recorded in the minutes.

Minutes of the Panel’s quarterly meetings, including actions and the names of those in attendance, will be shared by the Secretariat with the Participant Panel. A summary of the Panel’s quarterly meeting will be published on Genomics England’s website.

Additional Panel meetings may be held between full meetings, by request of the Secretariat.

The Panel Chair and Vice-chairs shall meet monthly with the Secretariat to the Participant Panel.

8. Remuneration and expenses

Genomics England offers Participant Panel members reimbursement for their involvement in its work, paid monthly through its payroll. Full details of this are set out in the Participant Panel Remuneration and Expenses Policy.

9. Complaints

If a Panel member is concerned about the behaviour of a member of staff at Genomics England, the Panel member should contact the Panel Chair and/ or the Engagement and Public Partnerships Director at Genomics England.

If a member of staff at Genomics England is concerned about the behaviour of a Panel member, including the Chair or a Vice-chair, they should raise this with the Engagement and Public Partnerships Director at Genomics England, who will discuss it with the Panel Chair or a Vice-chair as appropriate.

If a Panel member is concerned about the behaviour of another Panel member, they should raise this with the Participant Panel Chair. If the concern relates to the Chair, it should be raised with a Vice-chair. Panel members may also contact the Committee Manager or the Engagement and Public Partnerships Director at Genomics England for advice or to raise concerns at any time.

10. Review

These Terms of Reference are effective from June 2026 and, with the Participant Panel Remuneration and Expenses Policy, will be reviewed no later than biannually by the Secretariat with the Participant Panel and the Company Secretary.

11. Authority

These Terms of Reference have been produced to identify and formalise the roles, activities and responsibilities of the Participant Panel. Subject to the constitutional documents of Genomics England and these Terms of Reference, the Participant Panel shall determine its own procedures.

The Participant Panel has no authority to spend money on behalf of Genomics England without the agreement of the Engagement and Public Partnerships Director.