Online and face-to-face programmes to suit your CPD needs, apply now for September 2018
Page URL: https://www.bionews.org.uk/page_96356

Event review: The Great Genome Sequencing Debate

5 February 2018
Appeared in BioNews 936

'This House believes that everyone should have their whole genome sequenced at birth.' This was the motion discussed at The Great Genome Sequencing Debate at the Royal Institution on Wednesday 24 January, sponsored by the pharmaceutical firm Roche. The debate has arisen as a result of improvements in technology which means that whole genome sequencing (WGS) is now relatively affordable. At present, it only takes around 24 hours.

The debate, chaired Vivienne Parry –head of engagement at Genomics England – opened with a poll to gauge the position of the audience watching in the room and online. The room was split roughly evenly, while the online audience was two thirds in favour of the motion. I initially voted against the motion, largely based on concerns about privacy.

The panel consisted of two speakers in favour, Professor Anneke Lucassen and Dr Robert Green, and two speakers against, Dr Kat Arney and Dr Tara Clancy. I was surprised to find I was most persuaded by Professor Lucassen’s arguments. She saw WGS at birth as a resource that could be drawn on throughout the life course, as an alternative to repeated screening for various conditions and as a diagnostic and research resource.

Speaking on the issue that was my greatest concern, privacy, Dr Green presented evidence suggesting this was not well founded. He has been involved in research projects using genomic data for the past 15 years. He argued these demonstrated that genomic data can be held securely. He noted a number of benefits reported by participants in these studies, but claimed none felt they had been harmed by sharing their data. However, Dr Clancy raised the issue that this would not necessarily translate to the general public.

Again, I found Dr Lucassen’s position persuasive on this issue. She pointed out that there is already a great deal of medical information out there, but we don’t feel concerned about this, giving several examples such as the data from heel-prick tests. She also highlighted the strangeness of feeling we have a right to our genomic data, when we do not experience this feeling about other medical data, such as X-rays. While medical data is sensitive and, if it were to get into the wrong hands, potentially dangerous, she suggested that there was nothing particularly special about genomic data compared to any other sort. She went on to suggest the key issue is how genomics is framed in current discussions.

The need to reframe the discourse around genomics, moving away from a deterministic narrative to a probabilistic one, was a central theme of the debate. This was picked up by Dr Arney in particular, who was clearly passionate about dispelling the deterministic narrative. She gave numerous examples of cases where genomic information does not translate to the phenotype. For example, the 'superheroes' whose genetic information suggests they should have a disease, but who are actually well, and 'knockouts' who are missing certain pieces of genetic information, but still have traits thought to be associated with this information.

The debate ended with some convergence. Dr Lucassen noted 'We're not that far from each other really', much to the (mock) dismay of the chair. All agreed that there is no benefit to sequencing and interpreting the whole genome of the entire population, due to the cost and uncertainty involved in this. Similarly, all appreciated that there are some risks in collecting the data, such as privacy concerns, but those in favour did not see this as any riskier than other kinds of medical data. 

The audience was polled again. There was a noticeable shift in the room towards the motion, although there was still a significant proportion against. I continued to vote against, but my reasons for doing so had changed. I was convinced that the privacy risks might not be as significant as I first thought, but voted against the motion on the grounds of cost and benefit. If WGS is to be carried out under the NHS, as argued for by Dr Lucassen, it needs to be demonstrated that this is a good use of NHS funds.

This was the position of Dr Arney, who pointed out there are a range of health interventions that we know have a positive effect, but are not offered on the NHS because they are too expensive. Given this, it does not seem appropriate to support funding for WGS unless it would yield a clear benefit. At present, Dr Green noted, no such cost-benefit analysis has taken place.

This debate is largely hypothetical at this point, as there are no serious considerations of population-wide WGS within the NHS now. Indeed, Vivienne Parry suggested such a thing is still 'light-years away', but emphasised the importance of having such conversations before it became a serious consideration, while there is still time to do so.

SOURCES & REFERENCES
RELATED ARTICLES FROM THE BIONEWS ARCHIVE
26 March 2018 - by Dr Loredana Guglielmi 
We live in the post-genomic era, whose start was marked by the completion of the sequencing of the human genome. But when the Human Genome Project came to an end in 2001, the scientific community faced an unexpected challenge: decoding the sequence of human DNA did not translate into understanding how it works...
26 February 2018 - by Martha Henriques 
The 100,000 Genomes Project has been extended to Wales, with an initial 420 rare diseaseĀ patients and patients' relatives set to have their whole genomes sequenced...
19 February 2018 - by Jean Bvumbe 
It's not often you get to play board games at work. Recently at Guy's Hospital in London, the research nurse team were delighted to try out The Genomics Game, released by the NHS's Genomics Education Programme...
12 February 2018 - by Ruth Retassie 
Nebula Genomics, a new firm founded by geneticists, has announced its plan to sequence customersā€™ genomes cheaply and allow them to sell their own genomic information for digital money...
2 October 2017 - by Sandy Starr 
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 Progress Educational Trust has set out to answer these questions, with its 'Basic Understanding of Genome Editing' project....
18 September 2017 - by Professor Becki Bennett 
A public event held on 11 September 2017, Manchester by the Progress Educational Trust...
21 August 2017 - by Dr Loredana Guglielmi 
US researchers have developed a new blood test to detect cancer-related DNA alterations before patients experience symptoms...
HAVE YOUR SAY
Log in to add a Comment.

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


Syndicate this story - click here to enquire about using this story.