Life Sciences Research for Lifelong Health

ESOF at Toulouse 2018

How do we create additional value for research?

In my opinion, the answer to this question is by incorporating different views in problem solving processes. This is precisely what we sought to do during the ORION workshop on genome editing research at the Euroscience Open Forum (ESOF). ORION, a project funded by the European Union’s Horizon 2020 research and innovation programme, seeks to open up the way we organise, fund and perform research by co-creating with different people. With more than 4,000 people attending each year, the largest interdisciplinary science meeting in Europe, ESOF seemed the perfect place for this experiment as it offered a unique opportunity for interaction and debate for scientists, innovators, policy makers, business people and citizens.

The 8th  ESOF Conference took place in Toulouse from 9th – 14th July 2018, with the theme of ╩║Sharing Science: Towards New Horizons╩║. Aligned with the conference’s theme and with the title ‘Can the public shape the future of genome editing research?’, the ORION session focussed on new ways for sharing science by bringing a multidisciplinary audience together with policy-makers, scientists, bioethicists, public engagement professionals and patient representatives to discuss key dilemmas that we may face as we seek to engage the public as the field of genome editing progresses.
Key questions discussed were:
  • How do we ensure that advice for policy-making is informed, timely and relevant? (Raised by: Dr. Mark Bale, from the Department of Health & Social Care of the UK Government) 
  • Should the public shape the future of genome editing research? (Raised by: Mr Lee Hibbard, representing the Council of Europe’s Committee on Bioethics)
  • How can scientists ensure that regulatory frameworks meet needs of research? (Raised by: Dr Carlo Carolis, from the Centre for Genomic Regulation in Barcelona.
  • Can potential genome editing treatments compromise the quality of life of patients? (Raised by: Dr Luca Franchini, from the Italian breast cancer patient support Foundation ANT).
  • How can governments ensure that citizens can have a say in policy decisions? (Raised by: Tony Whitney, from the Department of Business, Energy and Industrial Strategy of the UK Government).
Through the workshop, I tried to consider if there were shifts in attitudes towards these areas by polling the audience before and after the discussion session. Whilst the testing wasn’t as robust as we would have liked - some people came in and out during the session – we collected some interesting information:
  • We observed a 21% raise in audience’s certainty regarding how to ensure informed policymaking processes.
  • We observed a 5% increase in people disagreeing with the bioethics statement that the public should shape the future of genome editing research, yet the vast majority remained supportive.
  • We observed an 8% drop in support of scientists promoting regulatory changes.
  • We observed a 23% increase in people agreeing that genome editing treatments could compromise the quality of life of patients.
  • We observed a shift in views with regards to when to engage the public with emerging technologies, with people going from early research stages (from 47% to 32%) in favour of later development stages (from 35% to 45%).
The observed shifts in attitudes suggest that the exchange of viewpoints throughout the workshop helped the audience to build their understanding of the potential challenges in the field and how they could support processes in these areas.

Throughout this interactive and participatory session we witnessed how changes in attitudes can occur when relevant information is readily available. Similar experiments on public attitudes to genome editing research are being planned for the near future in the form of an ethics workshop and a public dialogue project at the Babraham Institute and partner organisations. Keep an eye on our public engagement bulletin or subscribe to our quarterly ORION project newsletter to keep track of our future activities on genome editing research and Open Science!



Image credit: Dr. Emma Martinez, ORION Open Science Officer, Babraham Institute
 

Posted

26 September, 2018

By Emma Martinez