Subscribe to the BioNews newsletter for free

Login
Advanced Search

Search for
BioNews

Like the Progress Educational Trust on Facebook


The Fertility Show


 

How should we discuss genome editing in public?

02 October 2017

By Sandy Starr

Appeared in BioNews 920

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.

There's never been a more important time for people to get to grips with this subject, when recent headlines have been dominated by news of researchers editing the genomes of human embryos.

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.

  1. 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'.

  2. Before attempting to describe or discuss genome editing, ensure that your audience has some understanding of what a genome is. Explain this if necessary.

  3. 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.

  4. 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.

  5. 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).

  6. 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.

  7. 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.

  8. 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

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

09 October 2017 - by Cara Foley 
'Would you donate your genome?' Straight to the point, the introduction immediately grabbed my attention. Genome donation wasn't something I had even considered before listening to this podcast, so I was very curious to learn more...

25 September 2017 - by Paul Waldron 
UK scientists have successfully edited the genome of human embryos to study the role of a gene key to the earliest stages of development...
21 August 2017 - by Giulia Cavaliere 
Picture this - it's the last day in the office before the summer holidays, you're looking forward to some sunshine and warmth, email auto-response set, and all ready to go. Then, all of a sudden: the news...
31 July 2017 - by Charlotte Spicer 
Scientists in the US may have successfully used genome editing in human embryos to correct disease mutations, according to a report by MIT Technology Review...
13 March 2017 - by Dr Katie Howe 
Chinese scientists have successfully used genome editing to correct mutations in viable human embryos for the first time...

HAVE YOUR SAY
Be the first to have your say.

You need to or  to add comments.

By posting a comment you agree to abide by the BioNews terms and conditions


- click here to enquire about using this story.

Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Jacques Cohen

Dr Anna Smajdor

Dr Andy Greenfield

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross


BOOK HERE

Good Fundraising Code

Become a Friend of PET HERE and give the Progress Educational Trust a regular donation