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Can public opinion shape the future of genome editing research?

This article is part of a Special Issue highlighting sessions held at ESOF 2018 Toulouse (9-14 July 2018).

Attend this session on 13th July at 13:30.

To edit or not to edit?

Who hasn’t heard about genome editing in the last few years? With over 10.000 PubMed entries, it is unsurprising that the scientific community and beyond are familiar with the term. The latest tool in the genome editing kit, CRISPR-Cas, allows scientists to make changes in the genetic material of a cell or an entire organism in a way that is easier, cheaper and faster than any previous genome editing technology. CRISPR-Cas accounts for almost 40% of the genome editing entries in the literature search engine, and is one of the most powerful tools developed in biology since the invention of the Polymerase Chain Reaction at the end of the last century.

CRISPR-Cas is extremely versatile, with countless applications for human and animal health, the environment and food supply. Its breakthrough characteristic in precisely editing the genome means that it has the potential to revolutionise many fields. However, with every great technology come ethical, scientific and social challenges. In the case of genome editing, some of these issues are: the extent to which we are entitled to modify genomes including potentially of future generations; who will have access to the prospective treatments for human diseases, and the fitness of current regulatory frameworks.

Reminiscent of a famous sentence by William Shakespeare’s Hamlet, we are faced with the dilemma: ‘To edit – and possibly change the course of nature, or not to edit – and miss the array of opportunities that this technology has to offer us?’

Opening up research and dialogue

The answer to the above dilemma will differ considerably depending on the person asked, their proximity to science and the specific purposes of the genome editing application being cross-examined. The publicly available information on the topic is difficult to navigate, sometimes inaccurate and often difficult to understand for the non-expert reader. It is responsibility of the scientific community to engage with society to ensure there is a clear understanding about the risks and opportunities.

Engaging with society and making research open and accessible, a concept dubbed as Open Science, is one of the priorities of the European Commission’s strategy for research. According to Commissioner Moedas[1] (Research, Science and Innovation), Open Science aims to “create new knowledge through global collaborations involving thousands of people from across the world and from all walks of life”. The objective of this new movement is to align scientific research to the values, views and expectations of society, which in turn will increase its impact and competitiveness.

The rationale behind Open Science is twofold. Firstly, increasing the impact and competitiveness of research will attract more talent, create more jobs and boost the economy. Secondly, opening up research to all will contribute in making society more scientifically engaged. Indeed the recent Royal Society public dialogue on Genetic Technologies[2] found that citizens are fearful of being kept from knowledge about new developments, of society not keeping up with technological changes and as a result of regulation not being fit for the purpose.

Public Engagement and Genome Editing

The need to make citizens active participants in scientific developments was proposed 21 years ago in the Convention on Human Rights and Biomedicine[3]. Widely referred to as “the Oviedo Convention, article 28 states that “the fundamental questions raised by the developments in biology and medicine are the subject of appropriate public discussion in the light, in particular, of relevant medical, social, economic, ethical and legal implications, and that their possible application is made the subject of appropriate consultation.”

An audience that is well-informed, consulted and feels involved is more likely to support research and consequent developments. This position is upheld by a recent survey on public attitudes to life sciences and genome editing run among 6,000 citizens in six countries across Europe as part of the ORION Open Science project. The survey showed that the higher the level of interviewees’ interest in life science, the more support they had for applications of genome editing beyond those directly related to human health. If we are to consider that the level of interest correlates with the level of familiarity with the topic, we can conclude that engaged audiences are more supportive of broader uses of genome editing – provided safety and ethical aspects have been scientifically addressed.

Engaging citizens in developments in life sciences is more relevant now than ever. In the future, we might be able to develop new therapies for conditions such as Huntington’s disease for which we currently have no treatment, by introducing modifications in the genome of affected individuals to ‘correct’ the disease-causing variant. Once potential harms of this application are evaluated, then informed clinical applications could follow. What could prevent this from becoming a reality? Ensuring that society is well informed and that supportive, evidence-based legislation is in place will be key.

Where to start?

As explained in this article[4], for policy frameworks to evolve and adapt to fit current needs, public support and a wide consensus with multiple partners is mandatory. ‘Can public opinion shape the future of genome editing research?’[5] is the title of an interactive session organised by the EU-funded ORION Open Science project[6] at the upcoming ESOF conference, aimed at engaging different audiences in this complex topic with broad societal implications. International representatives of four stakeholder groups, researchers, policymakers, patients and citizens, will discuss key issues that we may face as we seek to engage the members of the public as this technology progresses. Participants will have the opportunity to explore these issues from the four stakeholder perspectives and to contribute their own ideas and opinions.

Despite Europe being in an early stage in the process of engaging members of the public with genome editing technologies and its potential applications, events like the ORION session at ESOF will help to map existing knowledge gaps, misconceptions, trade-offs and to link different perspectives to policy needs. For science and technology to progress efficiently, the applications of these new technologies need to be aligned with public opinion. It is paramount that we ensure the societal debate keeps up with the fast pace of research.

Dr. Emma Martinez Sanchez, Dr Tacita Croucher

[1] Collected from European commission, Speech ‘A new start for Europe: Opening up to an ERA of Innovation’, Brussels, June 2015: http://europa.eu/rapid/press-release_SPEECH-15-5243_en.htm; last accessed 8 May 2018.

[2] Potential uses for genetic technologies: dialogue and engagement research: https://royalsociety.org/topics-policy/projects/genetic-technologies/; last accessed 20 June 2018.

[4] ‘Rethink public engagement for gene editing’ Simon Burall: https://www.nature.com/articles/d41586-018-03269-3; last accessed 20 June 2018.

[5] https://www.esof.eu/en/programme.html; last accessed 8 May 2018.

[6] http://www.orion-openscience.eu/; last accessed 20 June 2018.

Go back to the Special Issue: ESOF 2018

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