Board Members - Ethics Advisory Board

Our Future Health is the UK’s largest ever health research programme, bringing people together to develop new ways to detect, prevent and treat diseases. We are a charity, supported by the UK Government, in partnership with charities and industry. We work closely with the NHS and with public authorities across all nations and regions of the UK. It is designed to help everyone live longer and healthier lives through the discovery and testing of more effective approaches to prevention, earlier detection, and treatment of diseases.  

Our plan is to bring together 5 million volunteers from right across the UK who will be asked to contribute information to help build one of the most detailed pictures we have ever had of people’s health. Researchers will be able to use this information to make new discoveries about human health and diseases so future generations can live in good health for longer. 

Our Future Health values the advice of experts from the broad field of ethics on its Ethics Advisory Board (EAB) to help ensure that the programme is trustworthy and operates to the highest ethical standards to achieve its aims.

About the Ethics Advisory Board

The EAB provides ethical advice, challenge and oversight for Our Future Health’s activities, partnerships and policies, factoring in participant expectations and identifying risks for ethical issues as they emerge. The EAB support Our Future Health to ensure that ethical considerations are embedded in decision making and that the programme’s activities reflect public interest. The EAB works with Our Future Health to foster a culture of transparency with an appropriate level of openness to public scrutiny and a focus on demonstrating and maintaining public trust.

Topics that the EAB may discuss

The EAB has advised on a range of topics including Our Future Health’s recruitment of participants, partnerships, consent, feedback of health insights to participants, the offer of reimbursement, and topics related to the access of participant data. In future agendas, the EAB is likely to discuss aspects related to the use of AI, the recontact of participants to recruit them for additional research studies and trials through selection by genotype, new data linkages, feedback of integrated risk scores and on how policies related to participant loss of capacity may be developed and operationalised.

New Member Roles

The strength of this Board comes from its breadth of member experience. The Board is composed of a range of experts and includes representation from the Public Advisory Board as well as the Scientific Advisory Board. We are seeking new members who can demonstrate strong expertise in one or more of the following areas and we particularly welcome applications that bring diverse perspectives and backgrounds.

• Artificial intelligence and data ethics
• Predictive and health risk feedback
• Bioethics and applied/clinical ethics
• Genomics and population health research
• Social sciences and public attitudes on data uses
• Equity and inclusion

What’s involved?

The EAB meets at least three times a year (during business hours) with meetings typically lasting two hours. These meetings are to provide support and advice to Our Future Health teams and are held online. A longer in-person meeting is held once a year (in our London offices). Additional individual or small group discussions may occur between regular quarterly meetings for items requiring deeper engagement relating to members’ specific expertise. Appointments are for an initial 2-year term, with the possibility of extension.

Essential

• Significant expertise in one or more of the areas of listed above, with the ability to challenge and advise the Our Future Health team.  
• Knowledge of ethical issues relevant to the use of health information in the UK within the research context, with knowledge of ethical issues at the intersection of research and clinical care.
• Strong commitment to the interests of Our Future Health’s participants.
• A collaborative and constructive solutions-driven approach, with a commitment to the mission and broad objectives of Our Future Health. 
• The ability to devote sufficient time and energy to positively contribute to the board. 
• Ability to engage constructively with differing perspectives during deliberations whilst respecting and maintaining the confidentiality of discussions.

Desirable

• Previous experience working in multidisciplinary committees or advisory groups/committees.
• A broad network with the ability to source additional advice, expertise and make introductions. 
• Experience of working in either academic institutions, policy environments, public or patient advocacy organisations, or within the healthcare or research sectors.

We hope that board members will join this group in order to further the Our Future Health mission.

Members will be entitled to receive a compensation payment, on request, as well as reimbursement of reasonable expenses where applicable.   

Closing date for applications : 9am, Thursday 23rd April