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Podcast Review: The Naked Scientists - A Hundred Thousand Genomes

13 April 2015

By Sophie McLachlan

Appeared in BioNews 797

A Hundred Thousand Genomes

Naked Genetics, 14 March 2015

Presented by Dr Kat Arney

'A Hundred Thousand Genomes', Naked Genetics, Saturday 14 March 2015


In 2003 the first complete map of the human genome was unveiled and the world was promised a genomics-led revolution in medical science. In spite of this, it was only two years ago that the 100,000 Genomes Project was launched in the UK to sequence 100,000 genomes from NHS patients by 2017, aiming to finally bring the predicted benefits of genomics to NHS patients.

The reduced costs and increased speed of sequencing genomes have meant the hopeful dreams of personalised medicine may one day soon become a reality. However the underlying question remains - is the public ready for it?

This podcast by The Naked Scientists focused on addressing that specific question. By interviewing professionals in the field, including two speakers at a Progress Educational Trust (PET) event on the use of DNA in the 100,000 Genomes Project (see BioNews 779), it attempts to resolve some of the practical and ethical issues surrounding the project - and also how the scientists involved are attempting to tackle them.

Having only recently been introduced to the world of podcasts, I hadn't heard of the Naked Scientists and I was very relieved to find that the only thing that was exposed in their podcasts was the stripped-back accessible science. The podcast itself consisted of interviews interspersed with segments covering genetic research news and 'gene of the month'.

At first glance, what I liked about the podcast was the broad range of interviewees. Even if the Chief Scientist of Genomics England, Professor Mark Caulfield, was fixated on promoting the project, having the more patient-minded perspectives of Dr Sarah Wynn from Unique, a rare chromosome support group, and Dr Anna Middleton, a genetic counsellor from the Wellcome Trust Sanger Institute in Cambridge, left me feeling I would get a fair overview of the ethical issues surrounding the project.

One of the key ethical issues discussed at length is the ownership and sharing of collated data, a topic that is especially important given the recent announcement of a collaboration between Genomics England and industry (appeared in BioNews 796).

Although a genome is just a sequence of letters, it can hold a wealth of personal information and there is therefore an ethical dilemma regarding how much of this knowledge is fed back to the patients. Whilst Dr Wynn and Professor Caulfield both agreed that the decision should be the personal choice of the patients, Genomics England has already outlined a limited list of medical information they will feed back, seemingly taking some of that choice out of their hands. Also, the idea that a pharmaceutical company could know more about your predisposition to disease than you do could be unsettling for those involved.

The solution to these ethical dilemmas? According to the interviewees, it's making sure that patients are well informed. This is highlighted throughout the podcast, whether it is the importance of patient consent to share the information with other companies, or the basic understanding of what patients might achieve from their involvement and what having a genetic risk means.

Whilst Professor Caulfield addresses Genomics England's direct work in patient and public engagement, his vagueness regarding projects ('and through our public engagement team, we'll have a number of public engagement events') is slightly underwhelming considering the agreed importance of awareness.

Luckily the final speaker, Dr Middleton, does offer some hope, speaking out about how we can bring forward public discussions on genomics and the ethics related to these new mass-sequencing approaches. She introduces her own research, the GenomEthics study, a large-scale survey reaching 7,000 people from 75 countries so far, aiming to understand the opinions of the public on what they would want to achieve from genome sequencing.

However, it is a worry that all this ethical research is a little too late now that sequencing for the project has already started. In fact, Dr Middleton seems to agree, concluding that we are currently at a point 'where the science is moving so fast and it's going to be implemented in clinics so quickly, but the public aren't really there with it'. Unfortunately, it also seems the turn-around in public awareness won't be any time soon either, as she admits there is still a long way to go to turn genomics 'from something that's currently quite anti-social into something that's quite social'.

Overall, this podcast isn't for those who are looking for an education in genome sequencing or what the 100,000 Genomes Project is or does. Apart from the initial introductions, it lacks a description of the science behind or the logistics of the project. What it offers instead is the opportunity to question the ethics of this new genome-sequencing approach to medicine and our efforts as scientists, medics or just genetics enthusiasts to engage with the public and get them on board.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

10 July 2017 - by Dr Rachel Brown 
A packed public event, produced by the Progress Educational Trust in partnership with Genomics England, saw the Chief Medical Officer for England launch her report 'Generation Genome'...
20 April 2015 - by Meghna Kataria 
This podcast by the Guardian's Science Weekly features an interview with Professor Peter Donnelly from the University of Oxford. As a part of the People of the British Isles project, his team has just mapped the DNA of 2,039 Caucasian Britons from all over rural UK revealing new insights into what it means to be British...

30 March 2015 - by Kirsty Oswald 
Genomics England has announced a new consortium that will see it share data from the 100,000 Genomes Project with major industry players...
16 March 2015 - by Hannah Somers 
Three British men have been diagnosed with rare diseases after having their complete genomes sequenced as part of the UK-based 100,000 Genomes Project...
24 November 2014 - by David O'Rourke 
Genomics England is inviting applications from UK researchers, NHS clinicians and those in scientific training to access the data compiled by its DNA sequencing project, the 100,000 Genomes Project....
18 November 2014 - by Dr Sarah Wynn 
The 100,000 Genomes Project aims to sequence 100,000 genomes by 2017. A proportion of these genomes will be from patients who have an undiagnosed rare disease. This project has the potential to make a dramatic impact on the numbers of people receiving a much-needed diagnosis for themselves or their child...
10 November 2014 - by Dr Nicoletta Charolidi 
At this Progress Educational Trust (PET) and Genomics England event on the use of data in the 100,000 Genomes Project, a panel of experts had the opportunity to reflect on the goals of the project and respond to audience questions...

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Published by the Progress Educational Trust

CROSSING FRONTIERS

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 Andy Greenfield

Dr Anna Smajdor

Dr Henry Malter

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross

Sandy Starr


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