Are you worried what companies are doing to make money from your personal data and who is getting their hands on it?
Amid the panic about Facebook and Cambridge Analytica, imagine if the data was not ‘likes’ and survey results, but your most intimate biological particulars - the details of your genome.
If the thought of companies sharing the DNA code which provides your own genetic instruction booklet makes you queasy, you are apparently not alone.
Privacy concerns about how companies could share gene data are one of the biggest fears holding people back from getting their DNA read by commercial companies, it is claimed.
Genomics, the science of mapping genomes, is set to revolutionise medicine and public health, allowing scientists to diagnose rare conditions, understand diseases like cancer and to develop better, more targeted drugs with fewer side effects.
The biggest obstacle is educating people in the value of genomic data. People will pay $1,000 for an iPhone, but they won’t pay $1,000 to understand their DNA
Dennis Grishin, Nebula co-founder
The discipline also promises to transform public health in the developing world, allowing better understanding and treatment of infectious diseases and epidemics.
But big studies need large databases of genomic data, from huge numbers of people, that can be easily shared and analysed. Somewhere over a million people have been sequenced so far and researchers complain the lack of data is hampering studies.
The cost of sequencing and the fears that people will not have control of their data are deterring people, according to Harvard scientists and technology entrepreneurs who say they have come up with a solution.
Their ambitious proposal will allow you to not only get your genome sequenced, but potentially to also cash in on the data making money by securely sharing it with researchers or pharmaceutical companies.
Their company, Nebula Genomics, aims to marry two of the hottest technologies around - genetic sequencing and the secure blockchain platform underpinning crypto currencies like Bitcoin.
The venture is co-founded by Professor George Church, a Gandalf-like American geneticist feted as a visionary in DNA sequencing.
Nebula hope to persuade you that genomics can enter the sharing economy. By getting your genome read, you can improve your own health care, help your family, do something altruistic that will help health research around the world and even get paid for it.
It is only 15 years since the first human genome was fully sequenced after a $3bn international project taking more than a decade.
The cost has since plummeted to around $1,000 as technology breakthroughs have enabled quicker reading.
Yet that cost is still too high, consumer research by Nebula shows.
Their survey found that nearly three-in-10 were put off by the cost and two-thirds thought they wouldn’t pay more than $250.
The other big turn off is privacy. Their survey found that 29 per cent of people had concerns about their data.
“Most of them find the cost just not worth it and the other is privacy, people are concerned about what could be done with their genomic data,” explains Kamal Obbad, another of the co-founders.
Commercial firms like 23andMe and Ancestry already read genomes, though not full sequences, and this data can be purchased by research companies.
Nebula want to cut out these genetic middlemen and use Blockchain as the basis for a sharing community that allows people potentially to monetise their own genome.
People will pay to get their genomes sequenced by Nebula, though if they have characteristics or a medical history particularly of interest to researchers, then this cost could be subsidised.
Armed with their new genome data, they can then control exactly who is given access, either keeping it to themselves, or if they want to, can sell it to researchers.
Early adopters and those with particularly sought after characteristics could make “a reasonable amount of money”, says Mr Obbad. Though the company won’t elaborate on how much individuals stand to gain, they point out they will be tapping into a genomic data market serving big pharma companies that is already already worth billions. Drug giants have enormous resources and spent more than $150 billion on research and development in 2016 alone. They already pay the right volunteers tens of thousands of dollars to take part in clinical trials and sought after genomes are likely to be just as lucrative, Nebula suggests.
But earnings will ultimately not be the main driver for people getting sequenced, Nebula reckons, compared with the prospect of better, more personalised healthcare.
Having their genome sequenced will allow them to make informed family planning decisions, while doctors will be able to give them more tailored drugs and therapies.
Persuading them of those material benefits and that there is more to getting your genome sequenced than a bunch of “fun facts” about their makeup is currently Nebula's biggest obstacle.
“I think the biggest one is really educating people in the value of genomic data,” says Dennis Grishin, another of the co-founders.
“Most people will pay $1,000 for an iPhone, but they won’t pay $1,000 to get their genome sequenced to understand their DNA.”
For researchers, the proposed benefits include not just access to more genomes as more people join, but also easier access to data.
An early problem of genomics is the vast size of the data required. With each genome 3 billion letters long, sharing and downloading data is slow and cumbersome.
Nebula’s claim to be able to solve both these problems has caused a lot of interest since the idea was floated in a white paper in February, says Prof Stephan Beck, professor of medical genomics at the University College London Cancer Institute.
Healthcare delivery is so different in different countries. This Nebula proposal is a very American take on it. It’s not necessarily right or wrong, it’s just an American take.
Dr Ewan Birney
“I think everyone at this point is really intrigued, because it offers fundamental solutions to problems that we have not been able to overcome. Whether this is going to work, still I think needs to be shown, but at least we have now a concrete proposal which promises to overcome fundamental problems.”
Nebula says it will decentralise how the vast quantities of data are stored into a cloud, making it easier to analyse.
Prof Beck said: “I think what has created the excitement in the community, is that there is really a proposal here on the table which solves the problem of getting very large cohorts organised in a single place with access where the data sharing and the data transfer problem can be overcome. Perhaps completely and that would be fantastic progress if that were to come true.”
Genomics is already transforming the study and treatment of rare diseases and cancers. It also holds promise for understanding infectious diseases in the developing world.
Nebula claim their model could widen the pool of genomes that scientists study, moving beyond the well-off American and Western European subjects that currently make up the majority of sequences.
“One of the problems we have right now with genomic data is that some groups of people are really over represented, while others are really under represented,” said Mr Obbad.
“Those really strongly underrepresented groups tend to be those socio economic groups that are less well off.”
Nebula’s model allowing researchers to subsidise the cost and will “eventually attract many groups of people that are currently strongly under represented,” he says.
Not everyone is carried away with the hype though.
Dr Ewan Birney, director of the European Bioinformatics Institute, said Nebula’s “teenage geeks in a room” proposal fails to appreciate advances in Europe where the public is more trusting of public institutions with their data.
He said countries like the UK, Denmark, France and Finland were already building powerful genomic databases as their state-based health systems sequence more and more people with rare diseases or cancer.
He said: “Because healthcare delivery is so different in different countries, you don’t get the same schemes in the different countries. This Nebula proposal is a very American take on it. It’s not necessarily right or wrong, it’s just an American take.
“You really need to see it in the context of America. There are two things about that, obviously a slightly more individual rights-based view where every individual is a sort of island and it fits that world view. But the other key thing is that healthcare there is a big business and very focused on the relationship between rolling out a new technology into healthcare and the way the business works, means the landscape is very different.”
Dr Sobia Raza, head of science at the Cambridge-based health policy think tank the PHG Foundation, is also cautious.
“It’s an interest concept in terms of its approach to facilitating data sharing, but I guess from my perspective how it will work in practice and whether is a model that will work for individuals and the companies and researchers seeking genomics still remains to be seen,” she said.
She is also sceptical that users will be truly anonymous, particularly if they have to share medical details.
“While genomic data is not intrinsically identifying, to make it useful for research and clinical applications, it typically has to be combined with other sets of information about the individual, about their medical history,” she said.
“The idea that the data is not in the public domain so that equates to it being anonymous and private is questionable.”
Nebula admit there is a chicken and egg problem with people unable to see the benefits of getting sequenced, but scientists unable to deliver those benefits until they get their hands on more genomes.
Prof Church has spent decades working on DNA sequencing, but also trying to push the technology out of the lab into the real world, his colleagues say. They believe their proposal marks the tipping point, making genome sequencing mainstream enough to kickstart a revolution.
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