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ORION public dialogue on genome editing

29 March 2021
By Dr Emma Martinez
Public engagement officer at the Babraham Institute and project officer for open experiments and co-creation in the ORION project.
Appeared in BioNews 1089

What are the public's views on the use of genome editing in a 'fundamental research setting', and how does this differ from views on its use in medical and clinical applications? How and when should research performing and funding organisations engage the public with emerging technologies, such as the genome editing approach CRISPR/Cas9? Do engagement strategies differ across countries?

These questions were the focus of public dialogues carried out for the ORION Open Science project, in the UK, Germany, Sweden and the Czech Republic, by market research company IPSOS Mori. Carried out between November 2019 and January 2020, the discussions took place with 30 members of the general public in each country, over a day-and-a-half long event. Three research performing organisations and one science outreach organisation participated in these dialogues: Babraham Institute in Cambridge, Max Delbrück Center for Molecular Medicine in the Helmholtz Association in Berlin, Germany, Central European Institute of Technology in Brno, the Czech Republic and VA (Public & Science) in Stockholm, Sweden.

Participants were introduced to the concept of genome editing using research case studies that did not include clinical or medical approaches. In the case of the Babraham Institute, the case studies revolved around the use of genome editing to modify the genome of model organisms to study the role of specific proteins, to modify the epigenome of reproductive cells to study its effects in the offspring, or to search for molecular factors responsible for the age-dependent decline of our immune system. Participants' views of genome editing were found to be based on the potential societal impact or, as participants described it, 'the real-world application'. 

Just one participant had heard of genome editing in the group in the Czech Republic, and there was very limited awareness of genome editing among all participants in all countries. Also limited was the understanding of fundamental research, which is exploratory research with the main aim of expanding knowledge and understanding. The overall scientific process, where fundamental research lays the foundations for downstream medical and clinical applications, was also poorly understood. However, once these concepts were explained, there was unanimous support among participants for this type of research to help realise the potential benefits arising from acceptable uses of genome editing. 

Participants were interested in understanding the motivations behind scientists undertaking the research, and this was seen to build public trust in the scientific process. Given the potentially broad implications of genome editing on society, participants preferred to receive information about fundamental research via television and social media, as these have a broader reach. 

A fictional photographic story by artist Emilia Tikka was used to present a hypothetical future scenario in which a couple made opposite choices to use a rejuvenating treatment available via an inhaler device, to keep themselves physically younger. This was used to provoke discussion among participants in all countries, around the issues arising from a potential future use of genome editing. 

Participants identified 'improved healthcare and wellbeing', and 'more sustainable food production', as potential benefits that could be realised through genome editing. Despite participants agreeing with the potential value in genome editing crops and animals for improving food production, this proved to be less of a priority for them than medical applications. This finding could be an artefact of the dialogue focus, which was genome editing uses in fundamental research of relevance to the human species. 

Future possible medical applications were also discussed, with non-heritable somatic editing, or editing disease-causing DNA in non-reproductive cells, being seen as the most acceptable among participants. Participants in different countries had different caveats in their approaches. People from the UK and Sweden were most concerned with safety, people in Germany with efficiency and people in the Czech Republic with social inequalities. Participants' confidence in heritable genome editing was lower due to concerns over unknown or unintentional consequences and the possible implications on society. Editing of physical human traits such as eye colour and muscle tone was not seen as acceptable, by any of the groups of participants.

Participants were concerned about the potential misuse of genome editing. There seemed to be interest in public-facing, formal, agreed and respected documentation on the use of current and future genome editing - including risks, benefits, and regulatory guidelines. Such documentation could contribute to managing public expectation.

This public dialogue by the ORION project highlighted a number of previously identified messages, including the need to communicate the importance of fundamental research and its role in the scientific process, and to carefully frame the motivations behind the use of genome editing and its potential impact on society. The project also highlighted the limited awareness of current and future uses of genome editing, or guidelines governing its application, among the general public in four European countries. One outcome of the dialogue was that participants encouraged the scientists at the workshops to contribute more to informing citizens about health-related choices.

Participants in the workshops were keen to ask expert scientists: 'What can your research using genome editing do for me, today or tomorrow?' This again highlights the importance of considering public views to make research and innovation more relevant, impactful and trusted. This is only possible with research organisations developing more anticipative and reflective research governance frameworks and practices.

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