
The New England Journal of Medicine on Data Sharing - Phemist
http://www.nejm.org/doi/full/10.1056/NEJMe1516564
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aschreyer
I think this paper summarises everything that is wrong with academia and why a
lot of people have enough and are looking for ways out.

 _A second concern held by some is that a new class of research person will
emerge — people who had nothing to do with the design and execution of the
study but use another group’s data for their own ends, possibly stealing from
the research productivity planned by the data gatherers, or even use the data
to try to disprove what the original investigators had posited._

According to the authors, trying to reproduce results or possibly disproving
them is worse then theft. That already says it all. Especially in medicine,
where reproducibility is severely lacking and research fraud is certainly far
from uncommon.

 _There is concern among some front-line researchers that the system will be
taken over by what some researchers have characterized as “research parasites
"._

Wow, strong language here. Imagine everyone who used someone else's results to
advance science would be called a research parasite. The authors have an
extremely cynical view on science and are simply equating it to business and
career.

To be honest, I am not surprised that this is coming out of NEJM or another
medicine/molecular biology journal as this is a fairly common attitude once
you rise in the academic ranks in those areas.

~~~
randycupertino
... "or even use the data to try to disprove what the original investigators
had posited"

\- isn't that the whole point of peer reviewed research?!

------
c3t0
_There is concern among some front-line researchers that the system will be
taken over by what some researchers have characterized as “research
parasites.”_

So we should consider Francis Collins & James Watson "research parasites"?

Without their own analysis of other researcher's data the double helix would
not have been discovered.

You cannot control information/data just because you gathered it. Pick up your
marbles because you do not like what your pears concluded?

Science is based on reproducibility and peer review.

Peer review without full access to data is a fallacy.

~~~
trisomy21
Francis Crick.

~~~
c3t0
Freudian slip.

 _Before being appointed director of the NIH, Collins led the Human Genome
Project and other genomics research initiatives as director of the National
Human Genome Research Institute (NHGRI)_

[https://en.wikipedia.org/wiki/Francis_Collins](https://en.wikipedia.org/wiki/Francis_Collins)

------
jrkelly
This sentence in pretty staggering: "... people who had nothing to do with the
design and execution of the study but use another group’s data for their own
ends ... or even use the data to try to disprove what the original
investigators had posited." As in, science.

~~~
jdminhbg
As a non-scientist who's seen that quote tossed around in a few different
places in the past couple days... Is there a non-awful way to read that? It
sounds almost like a parody of a tone-deaf status-obsessed researcher; is
there some kind of context that makes it ok?

~~~
frankmcsherry
If you put the omitted "..." back in to the quote, it makes it clearer that
the "for their own ends" is about appropriating credit rather than testing
alternate hypotheses.

More importantly, the full paragraph starts "A second concern held by some is
that...", signaling that this characterization is a not-universal opinion
about what might be bad about data sharing. The _very next paragraph_ argues
that it doesn't have to be this way, which is the whole (missed?) point of the
text.

It's almost like the posts here are trying to make the authors' case about the
hazards of data sharing for them.

~~~
aschreyer
The "second concern held by some" is clearly a rhetorical figure of speech to
make it sound as if they are not really sharing it, although the rest of what
the authors say only deals with this exclusively. The first concern complete
disappears. They are also using the term parasite or parasitically throughout
the paper, which is not really helpful in this context.

The real concern of the authors, as it appears to me, is that you "own" the
data that you produce and should have the exclusive right to use it - they
call it "obvious extension of the reported work".

 _How would data sharing work best? We think it should happen symbiotically,
not parasitically. Start with a novel idea, one that is not an obvious
extension of the reported work_

On the other hand, if you have a novel idea, you are supposed to work
"symbiotically" with the authors with _relevant coauthorship_ :

 _Third, work together to test the new hypothesis. Fourth, report the new
findings with relevant coauthorship to acknowledge both the group that
proposed the new idea and the investigative group that accrued the data that
allowed it to be tested_

The problem is that science does not work this way. You cannot own the facts,
as someone famously said. Imagine people in computer science or mathematics
held the same attitude, especially in artificial intelligence/machine
learning.

~~~
CamperBob2
_Imagine people in computer science or mathematics held the same attitude,
especially in artificial intelligence /machine learning._

"Hi, I'm a patent attorney. What's going on in this thread?"

------
CamperBob2

       "However, many of us who have actually conducted clinical 
       research, managed clinical studies and data collection and 
       analysis, and curated data sets have concerns about the 
       details."
    

The rest of us have some concerns too, Doctor.
[http://journals.plos.org/plosmedicine/article?id=10.1371/jou...](http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020124)

------
pcrh
The authors have chosen an unfortunate way of expressing themselves, to say
the least.

The evident fact is that _published_ data is there for anyone to re-examine as
they wish, however I believe that the authors are referring to unpublished
data and archived materials.

In the latter case, I would agree that potential users of these resources
should not be able to demand access without acknowledging and explicitly
collaborating with the "owners" of said resources. A free-for-all access to
unpublished data and archived materials would be a recipe for chaos and
certainly would result in wasting rare samples and increased pollution of the
literature with poorly performed studies. On the other hand, the guardians of
these resources should not be able to deny access to said resources by
qualified researchers.

------
appleflaxen
It is disappointing to see this kind of mentality in science, which is built
on a foundation of the primacy and public availability of measurement.

To see an oncologist from Harvard / Dana Farber get something so wrong is
really sad.

Self interest is an incredibly strong and insidious influence on our opinions,
and I suspect it comes into play when senior academics stake out positions
like this. Would they have agreed 20 years earlier in their careers? I doubt
it.

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bawana
I think we are seeing the infectious effects of capitalism spreading
throughout what was once the free domain of knowledge. Until the internet, the
stuff that cost money was usually 'stuff'. Ideas, algorithms and even software
was free, Then Bill Gates showed how something ephemeral as code (arrangements
of electrons?) code could build a business colossus. Then Google showed
advertising could be used to monetize not just information, but the desire to
find information. Then Facebook showed how to monetize our identities. In all
of this, the staid academics saw the efforts of their lives (theses, research,
papers, etc.) reprinted, disseminated and reused by others and they got
NOTHING. Of course a few people were lucky, Wally Gilbert had his insulin gene
sequenced, cloned into a bacterium and made billions with Biogen. But most
purveyors of knowledge have been left out in the cold. All the searches that
led to the knowledge they farmed has been monetized by others. And they get
nothing. So now we are in the era of flourishing paywalls, content restriction
and even browsers that subvert advertisements. And the academic administrators
have gotten so jealous, they have raised tuition beyond the reach of most
people. They want their piece of the pie, civilization be damned. And the
cannon fodder of the education machine, the teachers, are the ones getting
shafted as well. It's not just the New England Journal. It's all of education.

