bioinformatics, genomes, biology etc. "I don't mean to sound angry and cynical, but I am, so that's how it comes across"

Should we sequence everyone at birth?

Recently I was at a SULSA conference, and at the end, an expert panel was set up on stage, and with the audience they debated the following question: “should we sequence everyone at birth?”

Of course, I didn’t attend this debate.  Why?  For one simple reason: I knew they’d come to the wrong conclusion; and they did – the conclusion they came to was “not yet”, the argument being that we’re not ready, that we need to sit and think about the consequences first.  It was a predictably cautious answer.

The thing is – revolutionary thinkers, the people who change history – they’re not cautious people.  They’re also not committees.  Let me just state at this point that I have a tremendous amount of respect for the panel members, some of whom I know personally, and all of whom I know professionally;  but answers from crowds and committees always err on the side of caution.  I’m not really a cautious person myself – there are enough cautious people around me to keep me in check!

Below, I’ve rewritten history in a cautious style.  Let’s see how you like it:

Cautious history

At his home in Canada, a close family friend of Alexander Graham Bell persuades him to discontinue his work on the telephone, because in the future, big faceless commercial companies will use it to try and extract money from people, and pay-as-you-go lawyers will target the weak.  The telephone is never invented.

On December 17th 1903, Jack Smith rushes up to the Wright Brothers and tells them “Stop!  We shouldn’t build machines that will fly!  In the future people will crash and die; others will use them for war.  So please, stop – don’t invent flying!”

In 1928, a unknown laboratory assistant takes that contaminated petri dish and destroys it forever.  We don’t need penicillin, we don’t need antibiotics – in the future we’ll breed antibiotic resistance, so to be cautious, let’s not bother with antibiotics at all.

Back in the 1790s, during a drunken argument in the local public house, Edward Jenner is eventually persuaded that giving cowpox to people in an attempt to immunise them against smallpox is a very bad idea.  You see, in the future, vaccines will be discredited by a former glamour model and a fame-hungry ex-doctor.  Better not to have them at all, so we can prevent this ever happening.

“Psssst!  Tim!  Don’t invent the internet – honestly, mate, bad idea – in future, most people will use it for porn, and and bad people will use it to bully others.  Let it lie mate, we don’t need it….” – A friend of Tim Berners-Lee

“Ah shucks, you’re right – the public human genome effort is absolutely fine, it’ll get finished when it gets finished.  Best to be patient, I’ll leave them to it” – J. Craig Venter


Do you like my version of history?  🙂

The truth is we need a good balance; we need the cautious crowd, we need the majority to say “Wait!  We need to think about this!”.  At the same time, the people who change history are the outliers, the radicals, the people who say “F*ck it, I’m doing it anyway!”.  Of course, these are not always good people (I’m invoking Godwin’s Law now before someone mentions Hitler in the comments).

My opinion is that, In terms of individual-level sequencing, let’s just get on with it.  We’ve spoken about it for years, and I’m bored of waiting – in my first job in 1997, we were talking about personal genomics, except in those days it was called pharmacogenomics.

Let’s just start now.  Every baby that’s born from today, and from now on, let’s sequence them, and let’s record their entire health history in a structured way that allows computers to analyse the results.  In no time at all, we’d have hugely valuable, clinically relevant and actionable database.

What are we waiting for?!


  1. Actually, your argument-by-analogy does not support your opinion. In the same vein: “Hey Sanger! Don’t invent sequencing because in the future it will be abused by authorities against the citizens”. Sequencing is here anyhow, and use of DNA evidence (even without sequencing but simple RFLP) is already controversial for such practices as surreptitious collection and familal matching done by law enforcement. Sequencing technology is already here, so your argument is essentially kicking down an open door. The technology is here (and that’s good) and the (good) use, misuse and abuse are already here too.

    To the point of whether newborn DNA should be collected: even without the potential for abuse of the information, if done by fiat the violation of patients’ rights, parents rights and rights to privacy, would be strong arguments against it.

  2. In terms of immediate public health benefits, spending money on 100x X 1 tumour is probably much more sensible than spending it on 10x X 10 healthy babies.

    (To elaborate, if the argument is that the 10x x 10 healthy babies enables new population-level research into the pathways causally underlying common diseases, I think that this is true and should eventually be done. It will require a good link-up with the NHS, to be sure. But if you want most bang for the bucks spent now, therapeutic / diagnostic sequencing is the way forward.)

  3. Why not before birth?

  4. There is a full report of everything discussed during the debate on the SULSA website here: http://www.sulsa.ac.uk/node/554

  5. Actually, it was the conference attendees who voted that we shouldn’t be sequenced at birth, not the panel. This is important: it means that the general opinion in a set of scientifically literate people was not yet. Lots of work to be done…

  6. Yes Minister: Big Brother, about the National Database.

    Something like “Safeguards need to implemented during the setup, not afterwards”. There are both ethical and practical issues that need resolving, such as who has access to the data. I would not want an insurance company to have access.

  7. Nice idea but the likes of NHS systems tremble just to think of the massive overhead that newborn sequencing would create if we sequenced everyone at birth.

    As you know, the problem with whole genome sequencing is that you find *everything*, things that you will not care about until you are 50 and things that even if you cared, there is nothing you can do.

    There is also the ethical question that the person sequenced has not given consent to be so: is it therefore lawful for parents to override this? Are hence parents allowed to decide for the baby’s right of not knowing his/her genome information?

    This is not to mention the incidental findings that this would produce: i.e., finding that the father is not the real father.

    My take on this is thus make it accessible for those who want to have their baby’s genome sequenced at birth but, in most cases, know that there is very little, if anything, that you’ll be able to do currently other than knowing some nice anecdotal facts.

    A different matter altogether would be the sequencing of all those babies suspected to suffer a genetic disorder. In that case I believe it would be a good thing to have all of them sequenced straight away. It would help tremendously their diagnosis.

  8. “What are we waiting for?!”
    Public money. For which, one way or another, you need public support, which you get by “crowds and committees”, public discussion, democratic processes. I might be wrong but I think none of your historical examples were publicly founded, were they? There you go.

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