What do patients and laypeople think and know about genome editing and its implications? What are the best ways for experts and others to discuss genome editing in public, so as to improve public understanding and avoid confusion?
The charities Progress Educational Trust (PET) and Genetic Alliance UK have set out to answer these questions with a project entitled 'Basic Understanding of Genome Editing', funded by the Wellcome Trust. Throughout the first half of 2017 we conducted five day-long workshops plus additional online engagement activities with patients, practitioners, parents and carers from the (in)fertility, genetic disease and rare disease communities.
Such embryo research has now been carried out in the UK to study gene function (see BioNews 919), in the USA to correct a mutation that causes hypertrophic cardiomyopathy (see BioNews 912 and 916), and - most recently - in China to correct a mutation that causes beta-thalassemia (reported elsewhere in BioNews this week).
The final example is especially relevant to our project, as the Chinese researchers did not employ the CRISPR approach to genome editing that has increasingly become standard. Instead, they used an alternative approach known as 'base editing', thereby highlighting the importance of the public understanding genome editing in a way that is not confined to CRISPR.
Participants in our project - who had little or no prior knowledge of this area - explored language, imagery and ideas relating to genome editing. They examined media coverage, explanatory videos and other material. They heard from, and put questions to, experts in the science and ethics of genome editing. They even gave their own presentations on genome editing, drawing upon what they had learned.
Our eight 'Key Recommendations' summarise what we learned from our participants.
Use the term 'genome editing' exclusively. Do not use potentially confusing alternatives such as 'gene editing', 'genetic editing', 'genomic editing', 'genome engineering' or 'genetic modification'.
Before attempting to describe or discuss genome editing, ensure that your audience has some understanding of what a genome is. Explain this if necessary.
Prioritise explaining the use(s) of genome editing over explaining the mechanism(s) via which genome editing works. Deprioritise the term 'CRISPR' - do not use the term interchangeably with genome editing (as CRISPR is just one possible approach to genome editing), and think carefully about whether and when it is necessary to refer to CRISPR at all.
Explain genome editing as straightforwardly as possible, certainly in the first instance. Use simple analogies and metaphors - 'find and replace', 'copy and paste' and 'cut and paste' work well, and build on the fact that 'editing' is already something of a metaphor. Metaphors have their limitations, but they are useful in establishing basic understanding before attempting to go into greater detail.
When discussing uses of genome editing, distinguish clearly between:
- Human and other uses.
- Current and future uses.
- Research and treatment.
- Uses that are currently permitted and uses which would require regulatory change.
It may also be important to distinguish treatment from enhancement, but refrain from suggesting that there is a settled consensus on what this distinction means and where it lies (as that particular debate is ongoing).
When discussing a use of genome editing that relates to humans, take particular care to address whether or not it could (intentionally or inadvertently) affect the human germline - in other words, cause a heritable change to the genome.
Be prepared to have to differentiate between genome editing and genome sequencing and/or between genome editing and mitochondrial donation, as these are common areas of confusion. Having made it clear that these are different things, then bring the conversation back to genome editing.
Do not expect complete retention after one explanation of genome editing, no matter how well-received the explanation is. The message will need to be repeated multiple times, in order to achieve enduring comprehension.
A full report of the findings of our project can be downloaded at www.progress.org.uk/genomeediting
Genome editing will also be a key topic of discussion at PET's upcoming Annual Conference 'Crossing Frontiers: Moving the Boundaries of Human Reproduction', taking place at in London on Friday 8 December 2017. Full details of that conference can be found here.
PET and Genetic Alliance UK would like to thank all the participants in this project for donating their invaluable time and insights. Our participants are all keen to deepen this discussion, as are both of our charities - if you are interested in collaborating on follow-up work, please email firstname.lastname@example.org