14 ms·

Criticism of “Research Parasites” Moves Medical Journal in Wrong Direction

94 points by tokenadult 11y ago

cm2187 11y ago
To understand the medical profession point of view, you need to understand that the "material" used for their research is a rare and precious commodity: humans with a particular condition. Gathering enough patients to do a study on some particular disease is often difficult and the result of a career long reputation. Doctors usually refer to it as their "recruitment", ie patients addressed to them because they are the reference in this field, something that these "parasite" researchers will get credit for without having to earn it That's why I believe they are so protective with data.
- tokenadult 11y ago
  Thanks for sharing a professional insider perspective. But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data? Isn't that a much better professional reputation to have than the reputation of doctors who refuse to share data? Just in the last two weeks, the International Committee of Medical Journal Editors proposed new rules[1] about sharing clinical trial data. Commentators think that kind of data sharing is a very good idea.[2] As a reader of medical research who has heard a lot of "war stories" about the medical research process from family members who have observed that process at first hand, it seems to me that having more eyes on each data set is nearly always a good idea. [1] http://annals.org/article.aspx?articleid=2482115 http://annals.org/article.aspx?articleid=2482115 [2] http://www.statnews.com/pharmalot/2016/01/27/proposal-data-sharing-remarkable-turning-point-says-yales-krumholz/ http://www.statnews.com/pharmalot/2016/01/27/proposal-data-s...
  - cm2187 11y ago
    I am not a doctor. But I come from a family of doctors. Patient privacy aside, I do agree with you and with the critics of the New England. Science is about reproducable experiments, and in medecine, because of the constraints on the "research material", most studies are on the edges of statistical significance, and with professionals that aren't trained statisticians. The only mitigant to that is data sharing.
  - riahi 11y ago
    Sharing the data doesn't get you promoted in academia. Writing papers where you repeatedly mine the hand-crafted-over-20-years dataset does. If you give your dataset away for free, you're destroying your only way to advance in academic medicine. What we need are alternative funding models for academic medicine. With all the negative press and ethical issues from pharma funding the studies, and the NIH cutting their funding, publish or perish is even more important if you want a sliver of a chance to get some of the remaining grant money.
    - jensen123 11y ago
      So I guess the concern "that data sharing would require them to commit scarce resources with little direct benefit" is just a pretext then. Obviously, just putting some data up on a website is cheap.
      - riahi 11y ago
        It is cheap, but how do you measure that? There's no impact factor or associated journal publication. Since simply providing the data can't be measured for tenure or fit into a line item on a CV, academia as a whole assigns it zero value. This then means that simply sharing data is a huge net negative given the high costs of acquiring it.
  - phloxicon 11y ago
    "But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data?" In academia, it's better to be the primary author of a paper. More primary author publications makes it easier to get funding, keep your job and advance your career. If you share the data that you might have spent a lot of time and money collecting, you will either gain a citation or a non-primary author position. This is worse for your career. I don't like the system. Most academics would prefer to share to have their work verified or even to see what others might find but the incentives are to keep it private so that you can squeeze as many primary papers (or papers from your research group) as possible out of a data set before sharing the paper.
- carbocation 11y ago
  The backlash is from physician scientists (among others), though. It's not really "medical" vs "non-medical" so much as it is "closed" vs "open", with physician scientists on both sides.
- etangent 11y ago
  Yes, medical data is expensive and hard to obtain. But that's not (at least in the direct sense) the reason why so many medical researchers want to keep the data to themselves. The actual reason is that there is a whole cottage industry based on trading access to data for paper co-authorship. If the researchers were to share their data openly, the person who comes after them would be able to just cite the data without having to beg the researcher for access while promising him/her a sweet co-authorship spot in return.
  - _delirium 11y ago
    In CS (which is admittedly quite different), one counterbalancing incentive is that citations are at least as important as coauthorships in recent years, and releasing data is one relatively easy way to get a boost in citations. If you just release results, then people only cite your paper if they're doing particularly related work. But if you also release an accompanying dataset, all sorts of random people will cite this paper as the source of the data (if the data is interesting, anyway), even if they don't care about the paper itself.
  - bachmeier 11y ago
    > The actual reason is that there is a whole cottage industry based on trading access to data for paper co-authorship. Is that a problem? That's the way it should be. Requiring that the data be shared does not rule out a requirement that the person that creates the dataset is automatically a coauthor.
- dikdik 11y ago
  You're probably very close to correct on this, but it doesn't make it right nor the moral thing to do. Also, a lot of patients end up exploited by docs and companies who sell these very expensive samples taken from patients with rare diseases. The patients don't benefit from that, but the docs and medical institutions do. So while we try to "protect" medical research for the sake of doctors, they are not only using their patients for profit but they are hindering medical research in the name of their profits. And yes, I worked for a medical lab where I helped identify and sell patient blood and tumor samples with rare forms of blood cancers. I'm not necessarily against selling patient samples where the patient doesn't benefit, but blindly protecting doctors' claims to research data doesn't tell the whole story.
  - danieltillett 11y ago
    Just to nitpick it is more important to be the corresponding author. While there is often a fight over who gets to be the primary author (i.e. the junior person who did all the work), it is nothing compared to the fights that go on between the PIs as to who will be the corresponding author. Grants and millions of dollars are at stake in these fights.
pak 11y ago
For an idea of what some of the backlash about the NEJM editorial looks like, simply check Twitter for #researchparasites: https://twitter.com/search?q=%23researchparasites https://twitter.com/search?q=%23researchparasites -- and for a quicker version, some of the most influential voices are summarized here: http://www.forbes.com/sites/davidshaywitz/2016/01/21/data-scientists-research-parasites http://www.forbes.com/sites/davidshaywitz/2016/01/21/data-sc... The paragraph from NEJM's piece that drew the brunt of the scorn was the following: 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. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.” The meme has already given birth to at least one parody account: https://twitter.com/dataparasite https://twitter.com/dataparasite and one rather tongue-in-cheek domain purchase: http://researchparasites.com http://researchparasites.com
- Satifer 11y ago
  "...or even use the data to try to disprove what the original investigators had posited." How is this a bad thing? The original investigators - as scientists and seekers of the valid, the factual, the accurate - should welcome competing attempts, especially given that such attempts may reveal a faulty original analysis.
  - Satifer 11y ago
    ... there is just so much wrong with that editorial
  - c3534l 11y ago
    Indeed. It is such a bizarrely anti-science attitude. I suspect the mindset is not about advancing scientific discourse, but maintaining the sense of prestige the journal's name carries.
    - 11y ago
deleted 11y ago
[deleted]
lutusp 11y ago
It's really very simple -- either publicly supported science is meant to serve the common good, in which case total data transparency is required, or publicly supported science is actually meant to be a vehicle for corporate profits, in which case all scientific data is proprietary and those who share research data are cheating stockholders. All this apart from the most basic principle of scientific philosophy, in which earnest, transparent efforts to find out which theories cannot be falsified has the highest priority.
- frozenport 11y ago
  I'm laughing at your comment because it assumes the data is valuable! In reality a significant chunk of it is made up, this is more about people hiding their arses then corporate profits!
  - chris_wot 11y ago
    And why would they make up the data? Not saying they don't - Wakefield certainly did.
    - frozenport 11y ago
      Millions of reasons, but the problem is that scientists are not accountable. Especially, if their violation agrees with pre-existing intuition.
      - lutusp 11y ago
        > ... but the problem is that scientists are not accountable. Arguable, but if they don't have to release their data, then very true -- they aren't accountable. By requiring scientists to release their data, we make them accountable for any shenanigans that might otherwise be concealed.
  - lutusp 11y ago
    > ... because it assumes the data is valuable! In reality a significant chunk of it is made up ... Yes, but made-up data is also valuable. Were this not true, the world of advertising would collapse. An earnest economic evaluation has to assess the value of data apart from the issue of whether it accurately reflects reality.
rtl49 11y ago
The system within which many researchers must work to advance their careers is fundamentally at odds with sharing data. Collecting data is unglamorous, laborious, and often very expensive. This places much data collection firmly within the purview of research institutions, where resources and cheap labor are abundant. To progress in this context, one must publish. It isn't enough only to have collected the data; the researcher must also be the one to analyze it, and to do so before someone else does. Thus for any self-interested person in research, there is no incentive to disclose hard-won data to the public at large, effectively crowd-sourcing analysis and foregoing the career advantages and opportunities that a large store of useful data offers. One may find it unethical, but few who have committed many years of hard labor to advance in a research context would do otherwise.
- taurath 11y ago
  Very sad to hear. Too bad so much focus is on the individual - advancing ones career is at odds with advancing the science that you care about.
  - grandinj 11y ago
    It's not just career advancement, it's often also career survival. No papers - no funding. No funding - no job.
    - taurath 11y ago
      I wonder how much the bottleneck of resources (money/etc) would be trimmed down if centers of research were spread throughout the country rather than in very expensive real estate IE on a college campus? I'm probably super super over simplifying the problem.
- hannob 11y ago
  So what you're saying is essentially that the point of science is to advance careers, not to find insights and come closer to the truth? It may very well be true, but that would be a devastating account of the situation of today's science. And it would desperately need to be fixed.
frozenport 11y ago
We need goverment intervention. The scientific community has shown itself unable to produce reproducible results, and unwilling to share raw data. If the NIH demands that PubMed indexes our work, they should likewise demand that all the results are published.
chris_wot 11y ago
The Partially Derivative guys covered this on their latest podcast.[1] And by which I mean the bristled at the thought of being called "parasites". 1. http://www.partiallyderivative.com/news/2016/1/25/episode-38-mind-control-and-parasites http://www.partiallyderivative.com/news/2016/1/25/episode-38...
mesh 11y ago
Related planet money episode: http://www.npr.org/sections/money/2016/01/15/463237871/episode-677-the-experiment-experiment http://www.npr.org/sections/money/2016/01/15/463237871/episo...
pistle 11y ago
I'm a clinical research ex-data-minion. In that research context, it can take teams of 10's to 100's years to establish a usable dataset which can win grant money to both serve patient populations and reinforce the long-term sustainability of a clinical/academic institution. You bet your ass that data isn't going to be given out. It's not about covering your ass. It's about stewardship of data which has been culled via consent from participants, often of a very sensitive nature, with specific and explicit limits to how it will be used, managed, and shared. It's a gold mine that was built from years of getting at the forefront of a niche and then racing year after year to stay there. The gold from the mine isn't used just to line someone's pockets or add lines to a CV. That gold often is used to provide in the treatment of people who would otherwise be left to the whims of state legislatures that play political football with Medicaid and funding for health services for underserved populations. Also, from my experience, investigators sitting on good datasets often WANT to share them for use since it establishes increased value and bodes well for future grant competitiveness. Here again... bring your credentials since you are being privy to something bordering on sacred. When I see a term like "research parasites," I know who they are talking about, and no, they are not going to be accepted as a collaborator. It might be a lack of any facet necessary to carry that data stewardship at or beyond what the originator has done - and that is not something you easily demonstrate outside of the existing systems.
hannob 11y ago
If anyone's interested I recently blogged / commented about this issue as well: https://betterscience.org/archives/7-Data-Sharing-and-the-Research-Parasites.html https://betterscience.org/archives/7-Data-Sharing-and-the-Re...
YeGoblynQueenne 11y ago
tl;dr, the Market has broken Science.
- stevetrewick 11y ago
  This is not at all obvious, would you care to expand ?
  - chris_wot 11y ago
    The entire editorial is premised on the fact that some "parasites" shouldn't have access to scrutinise data because the market incentives are reduced.
    - stevetrewick 11y ago
      What market ? Markets balance supply and demand via prices or some analogue thereof. I thoroughly and enthusiastically agree that incentives are the basic problem but incentives != markets.
      - chris_wot 11y ago
        The "price" is reputation, and your name on a paper. It's a market of influence and prestige!
        stevetrewick 11y ago
        And that balances supply and demand how ? I understand where you're coming from, but 'influence and prestige'- unless they are traded - are not market goods. To preempt, competition based on status signals also != markets. Though what the NEMJ authors seem to desire is more akin to a market - I'll trade you this data for the prestige of a co authorship - this is not 'markets broke science', this is 'scientists believe an explicit market structure will maximise their utility'. These seem to me to be radically different statements, though this may be a matter of perspective.
cLeEOGPw 11y ago
How about separating data gathering from scientific analysis? Government would fund data gathering based on some things that scientists need and make that data publicly available, thus shifting the responsibility of data validity at least from scientists to "data miners". I think everyone would win from this data model.
cant_kant 11y ago
The original line from the editorial was: " There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.” This issue of the Journal offers a product of data sharing that is exactly the opposite. The new investigators arrived on the scene with their own ideas and worked symbiotically, rather than parasitically, with the investigators holding the data, moving the field forward in a way that neither group could have done on its own. " I do not read that as the editor calling researchers parasites. Rather, the editorial is exploring different ways of data sharing and collaboration. See the NEJM editorial that sparked the controvery at http://www.nejm.org/doi/full/10.1056/NEJMe1516564 http://www.nejm.org/doi/full/10.1056/NEJMe1516564 The blog post appears to go to some effort to misinterpret the editorial.
kriro 11y ago
I don't understand the redaction. The title of the journal is partly redacted...how many words can fit in that blank space even if you ignore word length analysis. "Review", "Journal" maybe a couple more. An then they also have a link to nejm.org and a seal that reads "New England Journal of Medicine". Am I missing something, that redaction is...odd.
michaelhoffman 11y ago
This editorial was sparked by a recent proposal by the International Committee of Medical Journal Editors (ICMJE). They are considering requiring that those publishing clinical trial reports must also share the underlying data. The ICMJE says that authors should have the ability to prevent release of the data for six months after publication. This will prevent researchers from performing independent analyses of a study, until well after its conclusions have been trumpeted in the press. Also, while many papers currently promise data or other materials are "available on request," anyone who has tried to actually get these data knows that this is often just wishful thinking. Only by requiring data availability in an independent repository at publication can journal editors and reviewers ensure that it will be available to other researchers and the public. The ICMJE is accepting comments on this proposal through April 18: https://forms.acponline.org/webform/comments-icmje%E2%80%99s-proposals-sharing-clinical-trial-data https://forms.acponline.org/webform/comments-icmje%E2%80%99s... If you are a patient or a researcher, please comment.

94 points by tokenadult 11y ago

To understand the medical profession point of view, you need to understand that the "material" used for their research is a rare and precious commodity: humans with a particular condition. Gathering enough patients to do a study on some particular disease is often difficult and the result of a career long reputation. Doctors usually refer to it as their "recruitment", ie patients addressed to them because they are the reference in this field, something that these "parasite" researchers will get credit for without having to earn it That's why I believe they are so protective with data.

tokenadult 11y ago
Thanks for sharing a professional insider perspective. But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data? Isn't that a much better professional reputation to have than the reputation of doctors who refuse to share data? Just in the last two weeks, the International Committee of Medical Journal Editors proposed new rules[1] about sharing clinical trial data. Commentators think that kind of data sharing is a very good idea.[2] As a reader of medical research who has heard a lot of "war stories" about the medical research process from family members who have observed that process at first hand, it seems to me that having more eyes on each data set is nearly always a good idea. [1] http://annals.org/article.aspx?articleid=2482115 http://annals.org/article.aspx?articleid=2482115 [2] http://www.statnews.com/pharmalot/2016/01/27/proposal-data-sharing-remarkable-turning-point-says-yales-krumholz/ http://www.statnews.com/pharmalot/2016/01/27/proposal-data-s...
- cm2187 11y ago
  I am not a doctor. But I come from a family of doctors. Patient privacy aside, I do agree with you and with the critics of the New England. Science is about reproducable experiments, and in medecine, because of the constraints on the "research material", most studies are on the edges of statistical significance, and with professionals that aren't trained statisticians. The only mitigant to that is data sharing.
- riahi 11y ago
  Sharing the data doesn't get you promoted in academia. Writing papers where you repeatedly mine the hand-crafted-over-20-years dataset does. If you give your dataset away for free, you're destroying your only way to advance in academic medicine. What we need are alternative funding models for academic medicine. With all the negative press and ethical issues from pharma funding the studies, and the NIH cutting their funding, publish or perish is even more important if you want a sliver of a chance to get some of the remaining grant money.
  - jensen123 11y ago
    So I guess the concern "that data sharing would require them to commit scarce resources with little direct benefit" is just a pretext then. Obviously, just putting some data up on a website is cheap.
    - riahi 11y ago
      It is cheap, but how do you measure that? There's no impact factor or associated journal publication. Since simply providing the data can't be measured for tenure or fit into a line item on a CV, academia as a whole assigns it zero value. This then means that simply sharing data is a huge net negative given the high costs of acquiring it.
- phloxicon 11y ago
  "But wouldn't any other researcher who obtains the data from doctors who recruited the patients have to give credit to the doctors who shared their data?" In academia, it's better to be the primary author of a paper. More primary author publications makes it easier to get funding, keep your job and advance your career. If you share the data that you might have spent a lot of time and money collecting, you will either gain a citation or a non-primary author position. This is worse for your career. I don't like the system. Most academics would prefer to share to have their work verified or even to see what others might find but the incentives are to keep it private so that you can squeeze as many primary papers (or papers from your research group) as possible out of a data set before sharing the paper.
carbocation 11y ago
The backlash is from physician scientists (among others), though. It's not really "medical" vs "non-medical" so much as it is "closed" vs "open", with physician scientists on both sides.
etangent 11y ago
Yes, medical data is expensive and hard to obtain. But that's not (at least in the direct sense) the reason why so many medical researchers want to keep the data to themselves. The actual reason is that there is a whole cottage industry based on trading access to data for paper co-authorship. If the researchers were to share their data openly, the person who comes after them would be able to just cite the data without having to beg the researcher for access while promising him/her a sweet co-authorship spot in return.
- _delirium 11y ago
  In CS (which is admittedly quite different), one counterbalancing incentive is that citations are at least as important as coauthorships in recent years, and releasing data is one relatively easy way to get a boost in citations. If you just release results, then people only cite your paper if they're doing particularly related work. But if you also release an accompanying dataset, all sorts of random people will cite this paper as the source of the data (if the data is interesting, anyway), even if they don't care about the paper itself.
- bachmeier 11y ago
  > The actual reason is that there is a whole cottage industry based on trading access to data for paper co-authorship. Is that a problem? That's the way it should be. Requiring that the data be shared does not rule out a requirement that the person that creates the dataset is automatically a coauthor.
dikdik 11y ago
You're probably very close to correct on this, but it doesn't make it right nor the moral thing to do. Also, a lot of patients end up exploited by docs and companies who sell these very expensive samples taken from patients with rare diseases. The patients don't benefit from that, but the docs and medical institutions do. So while we try to "protect" medical research for the sake of doctors, they are not only using their patients for profit but they are hindering medical research in the name of their profits. And yes, I worked for a medical lab where I helped identify and sell patient blood and tumor samples with rare forms of blood cancers. I'm not necessarily against selling patient samples where the patient doesn't benefit, but blindly protecting doctors' claims to research data doesn't tell the whole story.
- danieltillett 11y ago
  Just to nitpick it is more important to be the corresponding author. While there is often a fight over who gets to be the primary author (i.e. the junior person who did all the work), it is nothing compared to the fights that go on between the PIs as to who will be the corresponding author. Grants and millions of dollars are at stake in these fights.

pak 11y ago

For an idea of what some of the backlash about the NEJM editorial looks like, simply check Twitter for #researchparasites: https://twitter.com/search?q=%23researchparasites https://twitter.com/search?q=%23researchparasites -- and for a quicker version, some of the most influential voices are summarized here: http://www.forbes.com/sites/davidshaywitz/2016/01/21/data-scientists-research-parasites http://www.forbes.com/sites/davidshaywitz/2016/01/21/data-sc... The paragraph from NEJM's piece that drew the brunt of the scorn was the following: 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. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.” The meme has already given birth to at least one parody account: https://twitter.com/dataparasite https://twitter.com/dataparasite and one rather tongue-in-cheek domain purchase: http://researchparasites.com http://researchparasites.com

Satifer 11y ago
"...or even use the data to try to disprove what the original investigators had posited." How is this a bad thing? The original investigators - as scientists and seekers of the valid, the factual, the accurate - should welcome competing attempts, especially given that such attempts may reveal a faulty original analysis.
- Satifer 11y ago
  ... there is just so much wrong with that editorial
- c3534l 11y ago
  Indeed. It is such a bizarrely anti-science attitude. I suspect the mindset is not about advancing scientific discourse, but maintaining the sense of prestige the journal's name carries.
  - 11y ago

deleted 11y ago

[deleted]

lutusp 11y ago

It's really very simple -- either publicly supported science is meant to serve the common good, in which case total data transparency is required, or publicly supported science is actually meant to be a vehicle for corporate profits, in which case all scientific data is proprietary and those who share research data are cheating stockholders. All this apart from the most basic principle of scientific philosophy, in which earnest, transparent efforts to find out which theories cannot be falsified has the highest priority.

frozenport 11y ago
I'm laughing at your comment because it assumes the data is valuable! In reality a significant chunk of it is made up, this is more about people hiding their arses then corporate profits!
- chris_wot 11y ago
  And why would they make up the data? Not saying they don't - Wakefield certainly did.
  - frozenport 11y ago
    Millions of reasons, but the problem is that scientists are not accountable. Especially, if their violation agrees with pre-existing intuition.
    - lutusp 11y ago
      > ... but the problem is that scientists are not accountable. Arguable, but if they don't have to release their data, then very true -- they aren't accountable. By requiring scientists to release their data, we make them accountable for any shenanigans that might otherwise be concealed.
- lutusp 11y ago
  > ... because it assumes the data is valuable! In reality a significant chunk of it is made up ... Yes, but made-up data is also valuable. Were this not true, the world of advertising would collapse. An earnest economic evaluation has to assess the value of data apart from the issue of whether it accurately reflects reality.

rtl49 11y ago

The system within which many researchers must work to advance their careers is fundamentally at odds with sharing data. Collecting data is unglamorous, laborious, and often very expensive. This places much data collection firmly within the purview of research institutions, where resources and cheap labor are abundant. To progress in this context, one must publish. It isn't enough only to have collected the data; the researcher must also be the one to analyze it, and to do so before someone else does. Thus for any self-interested person in research, there is no incentive to disclose hard-won data to the public at large, effectively crowd-sourcing analysis and foregoing the career advantages and opportunities that a large store of useful data offers. One may find it unethical, but few who have committed many years of hard labor to advance in a research context would do otherwise.

taurath 11y ago
Very sad to hear. Too bad so much focus is on the individual - advancing ones career is at odds with advancing the science that you care about.
- grandinj 11y ago
  It's not just career advancement, it's often also career survival. No papers - no funding. No funding - no job.
  - taurath 11y ago
    I wonder how much the bottleneck of resources (money/etc) would be trimmed down if centers of research were spread throughout the country rather than in very expensive real estate IE on a college campus? I'm probably super super over simplifying the problem.
hannob 11y ago
So what you're saying is essentially that the point of science is to advance careers, not to find insights and come closer to the truth? It may very well be true, but that would be a devastating account of the situation of today's science. And it would desperately need to be fixed.

frozenport 11y ago

We need goverment intervention. The scientific community has shown itself unable to produce reproducible results, and unwilling to share raw data. If the NIH demands that PubMed indexes our work, they should likewise demand that all the results are published.

chris_wot 11y ago

The Partially Derivative guys covered this on their latest podcast.[1] And by which I mean the bristled at the thought of being called "parasites". 1. http://www.partiallyderivative.com/news/2016/1/25/episode-38-mind-control-and-parasites http://www.partiallyderivative.com/news/2016/1/25/episode-38...

mesh 11y ago

Related planet money episode: http://www.npr.org/sections/money/2016/01/15/463237871/episode-677-the-experiment-experiment http://www.npr.org/sections/money/2016/01/15/463237871/episo...

pistle 11y ago

I'm a clinical research ex-data-minion. In that research context, it can take teams of 10's to 100's years to establish a usable dataset which can win grant money to both serve patient populations and reinforce the long-term sustainability of a clinical/academic institution. You bet your ass that data isn't going to be given out. It's not about covering your ass. It's about stewardship of data which has been culled via consent from participants, often of a very sensitive nature, with specific and explicit limits to how it will be used, managed, and shared. It's a gold mine that was built from years of getting at the forefront of a niche and then racing year after year to stay there. The gold from the mine isn't used just to line someone's pockets or add lines to a CV. That gold often is used to provide in the treatment of people who would otherwise be left to the whims of state legislatures that play political football with Medicaid and funding for health services for underserved populations. Also, from my experience, investigators sitting on good datasets often WANT to share them for use since it establishes increased value and bodes well for future grant competitiveness. Here again... bring your credentials since you are being privy to something bordering on sacred. When I see a term like "research parasites," I know who they are talking about, and no, they are not going to be accepted as a collaborator. It might be a lack of any facet necessary to carry that data stewardship at or beyond what the originator has done - and that is not something you easily demonstrate outside of the existing systems.

hannob 11y ago

If anyone's interested I recently blogged / commented about this issue as well: https://betterscience.org/archives/7-Data-Sharing-and-the-Research-Parasites.html https://betterscience.org/archives/7-Data-Sharing-and-the-Re...

YeGoblynQueenne 11y ago

tl;dr, the Market has broken Science.

stevetrewick 11y ago
This is not at all obvious, would you care to expand ?
- chris_wot 11y ago
  The entire editorial is premised on the fact that some "parasites" shouldn't have access to scrutinise data because the market incentives are reduced.
  - stevetrewick 11y ago
    What market ? Markets balance supply and demand via prices or some analogue thereof. I thoroughly and enthusiastically agree that incentives are the basic problem but incentives != markets.
    - chris_wot 11y ago
      The "price" is reputation, and your name on a paper. It's a market of influence and prestige!
      - stevetrewick 11y ago
        And that balances supply and demand how ? I understand where you're coming from, but 'influence and prestige'- unless they are traded - are not market goods. To preempt, competition based on status signals also != markets. Though what the NEMJ authors seem to desire is more akin to a market - I'll trade you this data for the prestige of a co authorship - this is not 'markets broke science', this is 'scientists believe an explicit market structure will maximise their utility'. These seem to me to be radically different statements, though this may be a matter of perspective.

cLeEOGPw 11y ago

How about separating data gathering from scientific analysis? Government would fund data gathering based on some things that scientists need and make that data publicly available, thus shifting the responsibility of data validity at least from scientists to "data miners". I think everyone would win from this data model.

cant_kant 11y ago

The original line from the editorial was: " There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.” This issue of the Journal offers a product of data sharing that is exactly the opposite. The new investigators arrived on the scene with their own ideas and worked symbiotically, rather than parasitically, with the investigators holding the data, moving the field forward in a way that neither group could have done on its own. " I do not read that as the editor calling researchers parasites. Rather, the editorial is exploring different ways of data sharing and collaboration. See the NEJM editorial that sparked the controvery at http://www.nejm.org/doi/full/10.1056/NEJMe1516564 http://www.nejm.org/doi/full/10.1056/NEJMe1516564 The blog post appears to go to some effort to misinterpret the editorial.

kriro 11y ago

I don't understand the redaction. The title of the journal is partly redacted...how many words can fit in that blank space even if you ignore word length analysis. "Review", "Journal" maybe a couple more. An then they also have a link to nejm.org and a seal that reads "New England Journal of Medicine". Am I missing something, that redaction is...odd.

michaelhoffman 11y ago

This editorial was sparked by a recent proposal by the International Committee of Medical Journal Editors (ICMJE). They are considering requiring that those publishing clinical trial reports must also share the underlying data. The ICMJE says that authors should have the ability to prevent release of the data for six months after publication. This will prevent researchers from performing independent analyses of a study, until well after its conclusions have been trumpeted in the press. Also, while many papers currently promise data or other materials are "available on request," anyone who has tried to actually get these data knows that this is often just wishful thinking. Only by requiring data availability in an independent repository at publication can journal editors and reviewers ensure that it will be available to other researchers and the public. The ICMJE is accepting comments on this proposal through April 18: https://forms.acponline.org/webform/comments-icmje%E2%80%99s-proposals-sharing-clinical-trial-data https://forms.acponline.org/webform/comments-icmje%E2%80%99s... If you are a patient or a researcher, please comment.