Opiniomics

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

The age of the dinosaurs is almost over; NEJM publishes one of their last dying roars

Only this morning I was chatting to my wife in the car and we were discussing how important generational change is, how it is a force for good.  Take climate change – every single child is now being taught about the environment, about climate change, about how we are destroying our own planet.  Sure, the old white men that are in power now are raping the planet and ripping out every last drop of oil they can lay their hands on; but they’ll die soon, and the children of today will grow up and take their place, and be more careful with our planet.   I expect similar stories for sexism and racism – they will disappear as long as we teach our kids the right values.

Of course, our kids will also do some awful things too, things that our grandkids will need to fix, but let’s not get into that.

How serendipitous then, that a pair of out-of-date, soon to be extinct dinosaurs vomited up this stinking editorial in NEJM about data sharing.  Had it been April 1st I’d be convinced it was a parody; alas no, these guys genuinely seem to believe that others who download and use your data for science are “parasites”, and even express fear (yes, that’s what it is, fear) that someone might use their own data to disprove their hypotheses.  The whole piece is dripping with disdain for these “parasites”, and I think this editorial (if it remains up!) will be remembered as a dark day for NEJM.

Sympathy for the devil?

Is there any way we can empathize with the authors?  Where does this feeling of data ownership come from?  It is of course the product of a broken system.  We are judged on the impact and number of our papers, which is weakly correlated with the amount of money we spend on our research; the amount we spend is strongly correlated with the amount of money we win in grants, which in turn is dependent on those papers being published.  So our entire system of reward is based on getting those publications so we can win more money and publish more papers.  Naively, there seems few incentives to share data, and many incentives to keep data to private so we can wring out every last publication for ourselves.

Wrong on many levels

Of course the reasoning above doesn’t stand up – as I explained here, the data do not belong to the scientist, they belong to the funder and should be released as soon as possible, for the good of science and the good of the public.  It is extremely arrogant to assume that you, as data generator, have the ability to extract all possible useful information from the data.  Others of course will have ideas, many better than your own, and those ideas deserve your data, they deserve life.  Perhaps most importantly, rather than damaging your reputation, releasing data does the opposite and will almost certainly result in more collaborations, better science and more impact for the data generator.   Contrary to the NEJM bile, open science is far better – for you, for science and for humanity in general.

The last roar of dying dinosaurs

The views in the piece are so out dated it’s almost funny.  Attitudes have been changing for years and will continue to do so.  Treat the article with the disdain it deserves – this is your grandparents moaning about how TV and the internet have spoiled everything and life was so much better in their day; this is the biplane telling everyone that spaceflight is bad; it’s the bicycle desperately hoping that no-one wants to travel 100mph in racing cars.

It’s a pair of dinosaurs looking at an approaching comet and thinking: “oh shit!”

5 Comments

  1. Great article. I challenge one thing though – is it really the funder who owns the data? (Maybe legally) but morally I feel it is the person it originally belonged to (the patient/research participant) who should be at the heart here. They gave their data for research. Go world, do research. Do a whole load of research. Give my data to others to do more research. Learn great stuff. Tell the world. Make the centre of what you do for good. I think research participants would be appalled to know researchers hoard their data like gold and stall the release of it to others until they can extract as much personal gain as possible.

    • Research costs money. The money comes from somewhere. The government usually confiscates value from people and gives to other people. This was the whole reason why America was established. We didn’t want to give our money to a king that took our work and money and used it for his own will. Now you are proposing that the value created by the money that was confiscated by government should be given to the person who got the illness. So we should reimburse the obese for the type 2 diabetes that their behaviors created? We should reward the lung cancer patients for the small cell lung cancer their smoking triggered? Should we reimburse the people who get hepatitis from tattoo imprinting with the proceeds from the drugs that save them?

      We are now $18 trillion dollars in debt and borrowing at least half of what the government “buys” and that debt is owed to people who need the money just as much as the people who get sick. Why don’t we use the output of the research to make products worthy of purchase and then use the money that is made after other risk takers get paid to pay back at least some of the debt. Where the hell as responsibility for one’s debts and property rights gone? It is the fundamental cornerstone of America and why we have such a high living standard.

  2. I strongly agree with Mick and also with Anna commenting above.

    When I was doing bioinformatics research a decade ago, I was disturbed on two levels (i) how experimenters would literally own the data until they published it, precluding even lab-wide analyses (ii) how the patients next door (I worked at an university hospital) whose tissues arrived fresh to be dissected were completely factored out of the equation. I thought to myself: “How would they feel if they knew their gift to science was being diminished by personal interests, and that an answer that they hope may come be delayed?”.

    There are the dinosaurs who claim that the patient is not smart enough to be trusted with their data. But, to be fair the issue is really complex and plays out on other spheres that scientists don’t have routine exposure to. I’m thinking about arcane data protection issues in Europe, the ban in the US from providing info on genetic variants that could impact health decisions, and even a ban in France on receiving your own DNA info in any way. Contrast this with the terms of AncestryDNA that reserve extensive rights on the DNA data files that you receive and on the use of your own physical DNA.

    All this being said, I think that scientists have a lot to gain from standing on the side of the patient. If the patient owns the data then they can share it as openly as they want and decide to become available to provide extra information or even extra samples to researchers. Therefore data sets would be live and evolving, constantly-enriched resources. Conversation between patients and researchers would become possible, unlocking exciting new science.

    Sorry for the folks studying worms and mice, as this is obviously not relevant…

  3. It depends on the field and funding agency of course, but many US NSF and NIH grants involving sequencing require that the reads be deposited in GenBank after a relatively short period of time (a few months at most). It is made very clear that the generator of the data doesn’t “own” it — at best they get a head start on analyzing the data.

  4. I’m afraid I’m less sanguine here.

    Twenty years on and we’re still fighting battles over open access of journals for goodness sake.

    For every research community that sees the advantage of open science it feels as if there are many others that see it as rocking the career progression boat (sorry I’m being entirely unScientific on this point).

    Gradually people are getting the point, through a combination of carrots and sticks (though ultimately we win through carrots) but the NEJM editorial should not be laughed off. They still carry weight – a concentrated backlash based on dubious evidence could still turn funders.

    The above points you’ve made are spot on – we just have to keep on directing them back at journals like NEJM.

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