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What you think about the 100,000 Genomes Project

26 May 2015

By Sandy Starr

From February to April 2015, readers of BioNews were asked for their views on the 100,000 Genomes Project, a UK Government initiative which aims to sequence 100,000 whole genomes from NHS patients and their families. The questions we asked were chosen from suggestions made by audiences at two public events last year, 'Genomic Medicine Needs You' and 'Genetic Conditions'. 775 of you responded to our poll.

The first question we asked was 'If you were eligible, would you participate in the 100,000 Genomes Project?' (at present, the only people eligible to participate are NHS patients with certain cancers, plus patients with certain rare diseases and their families). Of those who responded to this question, almost three-quarters (74 percent) said they would participate if they were eligible, while 16 percent of respondents said they would not participate, and 10 percent were unsure.

We then asked 'Why?'. People offered a wide variety of reasons for their willingness to participate, but a number of common themes emerged.

Many respondents said they would participate because they thought the project was important: 'I think it is important for society'; 'it is vital to study this area and gain useful information for future generations'; 'the potential benefits in terms of scientific advance are enormous'; 'it's a game changer'; 'it is the future of medicine'. One respondent wanted 'to be part of history in the making', while others said 'contributing to the discovery of solutions to diseases would be a great honour' and 'it's the equivalent of being asked to participate in the first electrocardiogram studies of the last century'.

Altruism was a common theme: 'I'm altruistic'; 'it won't hurt me - it might help someone else'; 'huge potential to help future generations'; 'good to be part of something that should help many people'; 'I want others to benefit from the information in my genome'; 'I would like to to use my results to help others who might be ill in the future, if not myself'. Sometimes these sentiments were expressed in terms of duty: 'medical research is a moral duty'; 'it's important to help scientists with human models wherever possible'; 'the project offers huge potential - but only if the public engages'; 'it is a civic duty - I want advances in healthcare, so I must participate'.

Some were motivated not by morality but by curiosity: 'I'm interested about my genetic makeup'; 'I would like to have information about my genome'; 'personal curiosity and nothing else'; 'really cool to see genome'. Sometimes altruism and curiosity were present in equal measure: 'to advance the knowledge database and personal curiosity'; 'it's interesting to me and of benefit to science'; 'furthering scientific knowledge (and nosiness)'.

Some respondents had a more practical interest: 'on the off-chance they identify any genetic risk'; 'to become aware of potential issues in my own genome'; 'interested to know my genome and whether I was at risk of any conditions'. Some of those with a practical interest said they were already dealing with specific diseases, and indeed some of them were already eligible for and participating in the project.

Responses along these lines included: 'I'd hope that the project would be able to provide me with a diagnosis or to help find out about better treatments for my condition'; 'hope of a molecular diagnosis and better informed prognosis'; 'it may help my understanding of my condition and if not it may forward research and development'; 'I have an idiopathic condition and would like to know if any genetic factors caused it'. There were survey respondents who indicated that they had adrenal insufficiency, Charcot-Marie-Tooth disease, diabetes, and rarer conditions including Churg-Strauss syndrome, Ehlers-Danlos syndrome and pemphigus vulgaris.

Other respondents had a practical interest in participating because their children were affected by disease: 'I have a daughter with a rare disease'; 'I have a son with a genetic disorder and I have just been diagnosed with bowel cancer and I would like to know if he is at risk'; 'my daughter has inherited Friedreich's ataxia'. One particularly moving response offered the following reasons for wanting to participate: 'Find out how to help my child. Prolong life expectancy. Take back control at a difficult time'.

What of those who said they would not participate in the project, or that they were unsure? Again, common themes emerged, most notably data and trust: 'I am still not convinced of data security'; 'do not wish my genomic data to be accessed by government'; 'lack of trust in UK Government data handling'; 'unclear about the ownership of my genetic data'; 'I do not trust that my data will be protected and will not be misused'.

Others were more concerned about the role of commercial interests: 'I don't agree with the commercialisation of genomic information'; 'I am not sure that the project is being fully open about its commercial strands'; 'I would be afraid that my DNA may be passed on to companies'; 'I don't want my genome sequence owned by the government and the data sold even anonymously by them'; 'the material will be used with commercial providers and information may be stored abroad'.

Some respondents had fundamental ethical objections to the project: 'too dangerous and unethical'; 'it is wrong and immoral'; 'it will lead to eugenics'. A handful of outspoken respondents mentioned fears of cloning, bioweapons and genocide, and expressed their objections to the project in language more colourful than we are accustomed to using on BioNews.

Some respondents who were uncertain about whether they would participate had concerns about what they might learn via their genome: 'I would need to think more about the implications of finding out possible life-changing information'; 'I know that what might arise in the future would worry me in the present'; 'I'm not sure how I feel about being given information on late-onset conditions'.

This brings us to our next poll question, which was: 'What feedback would you want from your clinician if you had your whole genome sequenced?'. Respondents could choose from options ranging from being told everything (which was the most popular option, selected by almost half of respondents) to being told nothing. The proportion who chose each option breaks down as follows.

  • 48 percent wanted 'directly related findings plus all other findings, even if they may not be important to your health'.

  • 38 percent wanted 'directly related findings plus a small number of "serious but actionable" conditions, that are known to be important to health and that can be acted on by clinicians'.

  • 4 percent wanted 'only findings that are directly related to the condition that led you to have your genome sequenced'.

  • 5 percent wanted 'no feedback whatsoever'.

  • 5 percent said 'I don't know'.

Related to this, we asked 'How confident are you that you understand what your whole genome sequence may tell you?' Of those who responded 35 percent said they were 'very confident' and 42 percent said they were 'fairly confident', while 18 percent said they 'not very confident' and 5 percent said they were 'not confident at all'.

It would seem likely that people's confidence in this matter has some bearing on their willingness to participate in the project, and the poll results bear this out. 84 percent of those who were 'very confident' said that they would participate if they were eligible, whereas this figure dropped to 76 percent for those who were 'fairly confident', 57 percent for those who were 'not very confident' and 46 percent for those who were 'not confident at all'. It is notable that even in that final category, almost half of respondents were still willing to participate.

The final questions in our poll sought people's views on the benefits and risks of participating in the project, and we will discuss responses to those questions in next week's edition of BioNews.

In conclusion, we would like to thank everyone who took the time to respond to the poll, everyone who attended our 2014 events and suggested questions for the poll, and our partners at Genomics England - the company, established by the Government to carry out the 100,000 Genomes Project, with whom PET organised last year's events and this year's poll.

SOURCES & REFERENCES

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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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