Will Big Data DNA analysis herald new era in medicine?

 
Computer graphic of a DNA autoradiogram and a human head.

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Often, you are barely aware of it, but hop on a train, spend some time in the shops, watch a movie or a match or visit your GP, and the chances are you will have contributed to half a dozen collections of mass data.

Government and companies now collect, store and analyse as much information as they can about the way we interact with them.

Their goal is the pursuit of efficiency, and to find ways to save, or make, money. There is even a phrase for it - "big data".

The idea is not just to collect this data, but to analyse it.

Take healthcare. In December 2012, the government announced a big data plan for perhaps our most intimate of data, the DNA read-out of 100,000 people with rare diseases and cancer.

WHAT IS BIG DATA?

  • Big data involves the gathering and analysis of data on a large scale
  • The data can come from our purchase records, digital photos, social media posts, mobile phone GPS signals etc
  • Companies can use it to help predict who is facing a divorce, planning a baby, looking to move house or change jobs
  • Supermarkets use big data to send money-off vouchers and offers for products they know their customers will like
  • In March 2012 the White House set up a $200m Big Data Research and Development Initiative to explore how it could help address problems facing the government
  • US Police departments use big data to predict crime hot spots and deploy officers before it happens

kshire Police's new technology predicts cri

It is a colossal sequencing effort. Not only does each patient have a unique DNA code, but so do their cancer tumours. And some patients will respond to certain drugs better than others, depending on the genetic variants they carry.

The claim is that a mass DNA database could herald a new era in medicine, and make the nation richer too. Aside from highlighting British innovation and attracting investment, the initial focus is to help people who are already sick.

For the rest of us, the argument goes, if enough people are on the database, trends will become clear.

So we could be more confident that our personal DNA read-out can be checked against those trends and might warn us we are more at risk of certain diseases, and do something about it like changing our lifestyle of getting screened.

We might also be able to avoid drugs known to be toxic in people that carry a similar genetic make-up to our own.

Prof Sir John Bell is one of the government-appointed "champions" for the Life Sciences industry, and chair of the government's Human Genomics Strategy Group. He sees genomics in the NHS as a vital tool and said it is quite a "dramatic change in the way that medicine is likely to evolve".

A graphic of DNA The struture of DNA was discovered in 1953

The big data at the heart of this is the DNA double-helix.

It is made of four chemicals - essentially a code with four letters. The string of letters that spells out a human being is huge - it took about eight years and cost billions of dollars, to unravel the first human genome.

But now, the computer technology that made that possible is far more powerful, and cheaper.

These days, it takes a little over a day to unravel the DNA sequence of a single individual. And though it is not yet possible, there is talk of a £60 price tag.

Aside from cheaper, more powerful technology, it is also scale that brings the real power.

If the plan takes off, then the sheer numbers of patients involved will allow researchers, both public and private, to ask all sorts of questions of the dataset.

The NHS already has big data projects in place, notably, a system that enables scientists to carry out research on our clinical information, once anonymised, and smaller scale genetics research databases, such as UK Biobank, but what is new is the idea of bringing all of this together.

Genetic testing A national gene database might aid epidemiology

"The great thing about the UK, and particularly the English NHS, is 50 million people and it's at that scale that you're probably going to have the power to detect all kinds of things that are very powerful in terms of the management of disease, and have quite a profound impact," said Prof Bell.

He said he does not stand to make any money from the project himself, though he told us he sits on the board of Roche and Genentech, pharmaceutical companies which may benefit from genomics being applied more widely in healthcare in the UK.

There is some agreement that having genetic information from somebody who is already sick can help to find the best treatment for them.

What is less clear is how much the entire genetic read-out of a healthy person can tell you about the illnesses they might get in the future.

Just because someone carries a particular change in their genes, in most cases, it is far from definite that they will go on to become ill.

We are into the realm of probability and risk, which are notoriously difficult to assess and convey.

Identification by data

There is also the issue of privacy.

Professor of security engineering at University of Cambridge, Ross Anderson, has been asked by the Nuffield Council on Bioethics to join a team that will examine the pros and cons of big data and genomics in the NHS.

The government says the information in the new database will be anonymised. But if it is linked to medical records, that will bring new risks, according to Prof Anderson.

Start Quote

The 'grand bargain' that the government is offering us is that if we give them our DNA then they are going to revolutionise healthcare”

End Quote Stuart Hogarth Bioethicist, King's College London

He said medical data is especially hard to protect because it is so rich in information and his primary concern is that individuals, and their data, could be identified by a process of triangulation: "If you look at the typical person's medical record they may have some things that are known to their friends and family, such as that you broke your leg on the 17 January 1991, and some things that you don't want all your friends and family to know, such as that you had a treatment for depression.

"The problem is that if you make de-identified medical records available, then everyone from whom the subject wants privacy knows part of the record - namely the leg break, which is enough to identify that record out of many records - and they can therefore get access to the sensitive information, namely the treatment for depression."

Prof Bell said there are already robust methods in place to protect people's privacy in medical research which rely in part on limiting access to the data to trusted research partners.

"You probably can't get around the issue that no data in any setting is absolutely anonymised and secure," he said.

"But I think the constraints in the system that have already been thought about for other types of clinical data are probably pretty secure."

That is not enough for Prof Anderson, who wants the government to make details public.

"What we actually need is for anonymisation mechanisms to be open to the public, so that we can work out for ourselves whether the protection is adequate.

"I want to be able to test them. I want to be able to kick the tyres, and if the government's lying, I want to expose them, and embarrass them for it."

Bioethicist Stuart Hogarth, of King's College London, said he is not sure people are ready: "The 'grand bargain' that the government is offering us is that if we give them our DNA then they are going to revolutionise healthcare.

"Well it's not clear in fact that we need so much genomic data to understand the genetic basis of health and disease.

"It's not clear that the government has the capacity to put in place the large-scale IT project of the sort that would be necessary to do this, and it's not clear that the British public is willing to accept that bargain."

Watch Susan Watts' full Newsnight report on Big Data and the DNA database

 

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  • rate this
    +2

    Comment number 249.

    As thy used to say on the last tv program worth watching (Tomorrows World) "and it could be a cure for cancer" lol

  • rate this
    0

    Comment number 248.

    For many years GPs (and to a lesser extent hospitals) sought to guard their detailed patient data from the central NHS - because - as everywhere - information is power. Gradually, the NHS has financially induced, cajoled and shamed them into loosening up that stance. Big data will, no doubt, be of clinical benefit - however there are other more subtle and far less noble agendas being served.

  • rate this
    0

    Comment number 247.

    oops, that link wasn't to Scientific American... still, it is still relevant.

  • rate this
    0

    Comment number 246.

    @245 Nothing significantly worse than he could do by a number of other means.

    Seriously, with the resources of a state, if you want to target a people from a hypothetical 'genetic bullet' you can just collect samples (e.g. hair) from scratch until you have enough.

    If it is crazy eugenics stuff... the world won't tolerate it.

  • rate this
    +1

    Comment number 245.

    The NHS has many big-data projects running - not the sign of a well thought out strategy. The data sets - anonymous, no names and addresses - are valuable to commercial organisations. When they come flashing money to buy data we already know the NHS will sell. Well, I'm not overly bothered: LABCON are bought & sold, but not evil. But, think! What could a future Hitler do with this capability?

  • rate this
    0

    Comment number 244.

    One problem with the NHS is that departments carrying out the same role in different trusts have different ways of working and do not share data which would prove the efficacy of different treatment methods enabling the best method to be employed in all cases.

    Effective data collection, sharing and use would improve treatment dramatically.

  • rate this
    +2

    Comment number 243.

    Yes..,.This could be the way to help people in trouble.
    Or...it could be the way to help a few people,get very rich...
    Given the track record of the Human Race....
    People will get rich,quicker, than the people in trouble.,get help...

  • rate this
    0

    Comment number 242.

    Interestingly, Scientific American have an article today showing how confidential DNA data can be traced to the donor. http://www.businessinsider.com/your-anonymous-genetic-data-can-be-tracked-back-to-you-2013-1

  • rate this
    0

    Comment number 241.

    @ 235 Not really: profit & infinite growth models did indeed work rather well (for some) in a world lands to colonise & less well-armed people to exploit. Things have changed!

    What? How did colonialism invent cars, trains planes, electricity, Radio, turbines, phones, TVs, PCs, WiFi, the internet? It was done by corporations for profit. The only motivation close to as inventive is war.

  • rate this
    0

    Comment number 240.

    Maybe, maybe not.

  • rate this
    +2

    Comment number 239.

    It's the same with every invasion of privacy. We wouldn't mind so long as the data was actually used to everyone's benefits, e.g. reducing costs. However the current record of every government since Thatcher is that it will be used to exploit consumers by corporation or used in imoral activities by the government.

  • rate this
    +3

    Comment number 238.

    I can see the day coming when the social dating scene will be subject to DNA profiling. Yes a prospective mate will demand to see your DNA sequence for inherited diseases before agreeing on a face to face meeting. Insurance companies e.g. Big Business will base access to policies on whether you have a potential health problem in your genes. A new social caste of undesired people will be created.

  • rate this
    +1

    Comment number 237.

    the powers to be have had this planned for years. now under the guise of medicine the sheeple fall for it. welcome to the new world order

  • rate this
    +2

    Comment number 236.

    18 months ago I moved and changed to a local GP. Within two weeks I recievedl letters and phone calls from several different places and organisations. It transpired that my details had come from the new GPs office. It took legal action to get my records removed, and to get off the GPs patient list.
    Most GP computer systems link to a local system linked to a national system,, they all leak.

  • rate this
    +3

    Comment number 235.

    @230 " Commercial profit has been the driving force of progress since the industrial revolution if not before. Beats me why so many are down on it. Paranoia again?"

    Not really: profit & infinite growth models did indeed work rather well (for some) in a world of seemingly limitless natural resources to plunder, vast new lands to colonise & less well-armed people to exploit. Things have changed!

  • rate this
    +1

    Comment number 234.

    I've had private DNA tests, including an exome test which has revealed some life-saving medical information. I chose companies that were trustworthy and had excellent privacy safeguards. I am looking into donating my data to medical research on my own terms, as opposed to being forced into it by anyone.
    I would NEVER trust the NHS to keep my genetic data private and neither should any of you.

  • rate this
    0

    Comment number 233.

    Could it get to the point where we could test the DNA of foetuses and eradicate all weaknesses and evolve into superbeings?

  • rate this
    +3

    Comment number 232.

    When I worked in the NHS (until 2010) I often had large databases of personal information of patients on my laptop , back and forward to work.Everyone I worked with also had this type of information.There is no information safeguard in the NHS. Agency staff had access to patients personal information on many levels.Never allow the NHS to keep your data on their systems. Do not trust them.

  • rate this
    +2

    Comment number 231.

    For Cameron's private health system to maximize its profits it is essential that a comprehensive DNA database is available to health insurance companies so that they know who should be refused cover.

  • rate this
    -1

    Comment number 230.

    @208. Selling it commercially is the best thing going for it. That is how medicines get developed. Commercial profit has been the driving force of progress since the industrial revolution if not before. Beats me why so many are down on it. Paranoia again?

    Bonus: Medicines are developed based on UK genepool. What country are they most likely to be developed for and work best in? Bingo.

 

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