Public and stakeholder stem cell dialogue (2008)
Stem cell research has transformed our understanding of developmental biology, providing the potential to advance healthcare in a number of areas - from the identification of new drug targets to the promise of regenerative medicine. For research to flourish though, it is important to understand and be responsive to wider social aspirations and concerns for the science.
The Medical Research Council (MRC) and Biotechnology and Biological Research Council (BBSRC) approached Sciencewise-ERC for funding in 2007 to find out more about people’s views on stem cell research. Together, the BBSRC and MRC commissioned a consortium, led by the British Market Research Bureau (BMRB), to carry out the largest ever public and stakeholder dialogue on stem cell research in the UK.
Dialogue activities took place in summer 2008 and over 200 members of the public took part in workshops which ran simultaneously in London, Cardiff, Bristol Newcastle and Edinburgh. In addition, nearly fifty stakeholders were interviewed from fields such as science, medicine, industry, ethics and religion.
A press release announcing the findings of this consultation was published in December 2008 – this contains a summary of the findings:
- There was conditional support for funding all avenues of stem cell research. A focus on basic and translational research should be priorities. For clinical research, priority should be given to serious diseases or injuries for which the current treatments are limited.
- Key concerns expressed during the dialogue focused on whether research using embryonic stem cells is necessary and how 'serious' disease is defined. These issues are likely to evolve in the future, making it difficult to establish firm guidelines on stem cell uses and donor consent. Ethics committees will need to account for donor and public views as the science develops.
- There were significant health and wealth opportunities to be gained from stem cell research. There needs to be greater investment and coordination between public (research councils and NHS) and private (pharmaceutical and venture capital) sectors to achieve this goal. There is a significant opportunity for a coordinated campaign by medical research charities to raise the resources and profile of stem cell science.
- The involvement of the private sector raised concerns about the means and ends of research. For public trust to be maintained, therapies should reflect public rather than solely commercial interests, with a focus on serious diseases. Moreover, the need to protect and exploit intellectual property rights needs to be balanced with the need to disclose information in the public interest. Research councils and universities should account for these factors when commercialising research.
- Whilst legislation in the UK was supported, tight regulation and the number of relevant authorities were viewed as cumbersome by a range of groups, including researchers, clinicians and the public. There needs to be coordination between regulators to ensure the seamless transition of research into routine clinical practice, which takes account of the novel aspects of cell based therapies.
- The governance of clinical trials was viewed as risk-averse by certain research and commercial respondents. Providing there was informed consent and potential risks had been fully explained, there was public support in trialling experimental therapies with patients. The views of patients should be paramount when making decisions around the development of stem cell therapies.
- Future dialogue should focus on the cultures and practices of research within institutions. Whilst large structured dialogue events are important, it will be fundamental that the everyday practice and discussion of science is mindful of societal views. Uncertainties in stem cell science should be communicated openly if the public debate is to avoid being dominated by hype. Substantive areas of interest include the private banking of cord blood and the potential of induced pluripotent stem (IPS) cells.
You can listen to MRC podcasts on the stem cell dialogue with Professor Chris Mason and Professor Michael Schneider. Visit the podcast page.
For further information on this project, please contact Louise Wren.
Contact: Louise Wren
Telephone: 020 7636 5122