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What next for genome editing? Politics and the public

15 January 2018
Appeared in BioNews 933

The ever-expanding limits of human reproduction are creating complex ethical and political challenges. One topic that has generated much contention is the possibility of editing the genome of human embryos. The fourth session of the Progress Educational Trust (PET)'s Annual Conference 'Crossing Frontiers: Moving the Boundaries of Human Reproduction' focused on the current status of genome editing both scientifically and politically, and explored how its role may evolve over time.

Dr Andy Greenfield, programme leader in mammalian sexual development at the Medical Research Council's research unit in Harwell, opened the session by imploring audience members to keep calm and 'carry on editing'. His plea was twofold; he primarily wanted to emphasise the importance of performing basic genomic research. Secondly, he aimed to quell the tendency to equate genome editing with dystopian visions of the future.

Dr Greenfield succinctly explained that the development of therapeutic genome editing technologies needs to be underpinned by basic research. We need to understand more than just the correlation between genotype and phenotype: we need to understand how genomes function, in particular, how human genomes function. Dr Greenfield acknowledged that this will be a laborious process but used a quote from Sir Venki Ramakrishnan, President of The Royal Society, to emphasise the importance of investing in non-applied research: 'Basic science yields fantastic returns on investment, but we cannot predict which investment will pay off, or when.'

Dr Greenfield closed the session by arguing for a distinction between the need for standards of safety and efficacy, and ethical questions that cannot be reduced to satisfying such standards. In some ways, he said, 'the ethics only truly begin when we have a safe and efficacious protocol'.

In the second talk Dr Elizabeth Garner, a functional genomics researcher at Caribou Biosciences, California, examined 'The Can, Can't and Won't for Genome Editing'. Caribou was founded by some of the pioneers of the CRISPR approach to genome editing, and Dr Garner started her talk with an overview of the evolution of genome editing technologies, to help put the relatively recent use of CRISPR into perspective.

The 'can' for genome editing largely concerned the creation of monogenic changes - although, as Dr Garner pointed out, the ability to deliver genome editing platform components to somatic cells or tissues is still an enormous challenge. In contrast, the 'can't' concerned deliberate alteration of polygenic traits, which is at present beyond the scope of this technology. The 'won't' lies in ensuring that genome editing will only be used in a therapeutic capacity.

The final talk of the session, 'How to talk about genome editing: putting CRISPR in its place', was given by PET communications manager Sandy Starr, who explored the importance of language when discussing genome editing in public. Starr created a persuasive argument for the development of a consistent genome editing vocabulary, emphasising that the use of variable and overly complicated jargon can cause public confusion and disengagement.

It is important that individuals who could potentially benefit from therapeutic genome editing, as well as those who care for them medically or socially, are able to understand the treatments that are being developed; we cannot make informed decisions without a robust understanding. PET recently conducted a project with fellow charity Genetic Alliance UK, funded by the Wellcome Trust, to investigate what patients and laypeople think and know about genome editing.

Starr coauthored the resulting report, Basic Understanding of Genome Editing, and drew on the findings during his talk to impart some top tips on how to discuss genome editing with the public:

  • Ensure that the audience knows what a genome is, and repeat this explanation often.

  • Use the term 'genome editing' exclusively; it can encompass both a single base-pair change and the loss of an entire chromosome (if brought about in a deliberate manner).

  • Explaining the potential uses of genome editing should be prioritised over explaining the mechanics of the process.

  • Deprioritise the term 'CRISPR', as genome editing can come in other forms.

Starr neatly drew together key points from the two previous talks to demonstrate that the story of genome editing is still unfolding and a common language is needed that can evolve alongside the technology.

Rather fittingly for a session focusing on public engagement, the post-talk discussion lasted longer than the presentation portion of the session and was expertly guided by the session chair Vivienne Parry, science writer and broadcaster. A number of salient questions were raised regarding the way in which genome editing is discussed. What metaphors can be used when explaining genome editing? Why do we not have an appropriate metaphor available for PGD? Should a distinction be made between genome editing and epigenome editing? Who should be responsible for assigning names to new technologies? Dr Garner responded to the latter question, stating that it is traditionally the scientists that get to name new technologies, but acknowledging that more consideration should perhaps be given to names by the scientific community to promote easier public dialogue.

In addition to a dissection of language, the discussion also strayed towards the moral and ethical issues that genome editing can provoke. Why are we continuing with applied research if we have acknowledged there is still so much basic research that needs to be performed? Will we be able to prevent individuals from overstating the capabilities of such technologies and constrain the propagation of false hope? The session also touched upon the problematic issue that TV and radio producers are often only willing to give scientists mere seconds to explain complex ideas, yet withdrawing from discussing such topics in the media can 'create a vacuum where scientists don't engage', leaving the floor open to individuals who could potentially disseminate misleading ideas.

There was also an interesting undercurrent of sociological thought running throughout the discussion. Why is the desire to have genetically-related offspring so deeply ingrained in humans? Is it a biological drive or does it stem from societal conditioning? One audience member cautiously asked whether it would be more efficient to encourage individuals to embrace gamete donation or adoption rather than resort to complicated and invasive genome editing technologies.

Overall, the post-talk discussion managed to successfully showcase the vast array of opinions that the topic of genome editing can elicit and beautifully illustrated why public involvement in the scientific arena is so incredibly important.

PET would like to thank the sponsors of its conference - the Anne McLaren Memorial Trust Fund, the Edwards and Steptoe Research Trust Fund, the ART Institute of Washington, Ferring Pharmaceuticals, the London Women's Clinic and Vitrolife.

SOURCES & REFERENCES
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