Ethics and Governance Framework

2. Guiding Principles

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In this section, we set out key principles which we believe should underpin the cohort. They are intended to help guide decisions, and to emphasise those issues that are especially important for Our Future Health to get right. 

  1. Building an effective research resource: The principal aim of Our Future Health is to create a cohort that facilitates high quality research in early diagnosis and detection, improved risk prediction and prevention. The outputs of the research should ultimately deliver benefit for the health of the whole population.   
  2. Responsive engagement and involvement: The public and participants should be actively engaged from the very beginning of the Our Future Health planning. Involving participants in a meaningful way over the lifetime of the cohort will help strengthen the programme, ensure it meets the expectations of those who contribute their time, data, samples and information, and help motivate participants to stay engaged. 
  3. Inclusive: Our Future Health must strive to recruit people with broad diversity, for example including a mix of ethnicity and socioeconomic backgrounds, in order to ensure the research results are of value across the UK population and to understand differences between different sections of the population.  
  4. Responsible: This is a complex programme; the nature of the studies based on the cohort will evolve over time. Some related to risk and early diagnosis may not live up to expectations and hypotheses may turn out to be false. There is therefore a potential risk of harm to participants, which Our Future Health must anticipate and avoid. Our Future Health should demonstrate a responsible approach, striving to ensure that it minimises any harm, and maximises benefit, while communicating carefully with participants. Our Future Health must embed flexibility to be able to respond to emerging opportunities. 
  5. Support for participants: Participants must be given appropriate support throughout the programme, and this must be adequately resourced. Communications must be clear and accessible to ensure participants understand the implications of participation, taking care not to overstate the likely clinical benefit for individuals and to manage expectations. Feedback of individual findings, including risk profiling, must be delivered sensitively and with appropriate support. 
  6. Collaborative: The Our Future Health cohort will only succeed if it is built on close partnerships between participants, researchers, healthcare professionals, charities, industry, funders, government and international research efforts. The roles of different partners must be transparent, and fairly defined. 
  7. Robust data security: Our Future Health must demonstrate a robust approach to data security, respecting and protecting participants’ privacy and confidentiality throughout everything it does. Our Future Health should embrace the opportunities of innovative uses of digital technology, while minimising any risks for participants. 
  8. Working closely with the NHS: The NHS should be able to derive benefit from new understanding, tools and treatments developed from research engaging the Our Future Health cohort.  While linking closely with the NHS, Our Future Health must be careful to ensure that healthcare professionals are not overburdened, and consideration must be given to the appropriate interface between research and care. 
  9. Transparent governance and oversight: Our Future Health must be governed well and in the public interest, with fully accountable governance processes. Our Future Health must be transparent and open to scrutiny across all activities in order to demonstrate trustworthiness and build confidence.  
  10. Facilitating access: A transparent mechanism will be needed to enable appropriate research access to the cohort and accumulated cohort data, in order to maximise the value of the resource in the public interest. The results of research must be open access and as widely shared as possible to contribute to the broader knowledge base. 

3. Guidance for Major Operational Themes >