Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Why medical scientists should share data

George Lundberg, MD and Eugen Tarnow, PhD
Physician
October 7, 2011
Share
Tweet
Share

Our kindergarten teachers and Hippocrates taught us to share. But after school, capitalism takes over among American medical researchers.

Eric Campbell writes in “Data Withholding in Academic Genetics” that it was frequent for investigators to be denied access to data. The reasons for denials include “too much effort” and protecting potential publications of students and themselves.

The respondents expressed only a little worry about protecting the commercial value of results: all data sharing is subject to transfer agreements that limit commercial applications of any of the shared data.

The lack of data sharing may have particularly serious consequences when data take decades to generate in diseases such as Alzheimer’s. Only after autopsy is the dataset complete.

Might the lack of progress during the last 104 years of Alzheimer’s research be related to unwillingness to share data?

Sage Bionetworks, a nonprofit research organization, writes “we’ve witnessed exponential increases in the quantity of molecular and genetic information without concomitant advances in the understanding of biology or disease,” and blames “current systems and practices for sharing datasets.”

Sage president Stephen Friend makes a compelling case for data sharing.

Half-hearted efforts to force researchers to share data include the NIH, which requires a “data sharing plan” for large grants, but nevertheless allows transfer agreements.

Some journals, such as PNAS, insist that data be shared or the authors will be barred from future publication. Again, in practice, it allows transfer agreements but does not review them.

That efforts such as these have not fully succeeded should not be surprising. Piwowar and Chapman report in “Public sharing of research datasets: a pilot study of associations” in 2011 in Journal Infometrics that “being subject to the NIH data sharing plan requirement was not found to correlate with increased data sharing behavior,” and the same applied to studies published in journals that “require” data sharing.

Many scientists in other fields share data.

Physicists even divide their researchers into experimentalists, who generate the data, and theorists who try to figure out what it means. A few years ago physics had been so successful that it was thought not to contain anything else discoverable. But that’s another story.

Medical scientists should share data.

ADVERTISEMENT

George Lundberg is a MedPage Today Editor-at-Large and former editor of the Journal of the American Medical Association. Eugen Tarnow is an independent researcher publishing in the areas of short term memory, scientific publication ethics, social and organizational psychology and semi-conductor physics.

Originally published in MedPage Today. Visit MedPageToday.com for more health policy news.

Prev

Psychiatry should not be a tool for social justice

October 7, 2011 Kevin 18
…
Next

MKSAP: 72-year-old woman with fatigue and decreased exercise capacity

October 8, 2011 Kevin 0
…

Post navigation

< Previous Post
Psychiatry should not be a tool for social justice
Next Post >
MKSAP: 72-year-old woman with fatigue and decreased exercise capacity

ADVERTISEMENT

More in Physician

  • The FQHC model and medicine’s moral promise

    Sami Sinada, MD
  • Who profits from medical malpractice lawsuits?

    Howard Smith, MD
  • A pediatrician on the lead contamination crisis

    Eric Fethke, MD
  • Physician burnout as a relationship crisis

    Tomi Mitchell, MD
  • The making of a rested healer

    Roxanne Almas, MD, MSPH
  • The decline of the doctor-patient relationship

    William Lynes, MD
  • Most Popular

  • Past Week

    • The dangerous racial bias in dermatology AI

      Alex Siauw | Tech
    • The high cost of PCSK9 inhibitors like Repatha

      Larry Kaskel, MD | Conditions
    • The decline of the doctor-patient relationship

      William Lynes, MD | Physician
    • Diagnosing the epidemic of U.S. violence

      Brian Lynch, MD | Physician
    • A neurosurgeon’s fight with the state medical board [PODCAST]

      The Podcast by KevinMD | Podcast
    • The FQHC model and medicine’s moral promise

      Sami Sinada, MD | Physician
  • Past 6 Months

    • Rethinking the JUPITER trial and statin safety

      Larry Kaskel, MD | Conditions
    • How one physician redesigned her practice to find joy in primary care again [PODCAST]

      The Podcast by KevinMD | Podcast
    • The dangerous racial bias in dermatology AI

      Alex Siauw | Tech
    • When language barriers become a medical emergency

      Monzur Morshed, MD and Kaysan Morshed | Physician
    • A doctor’s struggle with burnout and boundaries

      Humeira Badsha, MD | Physician
    • The stoic cure for modern anxiety

      Osmund Agbo, MD | Physician
  • Recent Posts

    • The FQHC model and medicine’s moral promise

      Sami Sinada, MD | Physician
    • AI companions and loneliness

      Ronke Lawal | Tech
    • The frustrating bureaucracy of getting a vaccine

      Richard A. Lawhern, PhD | Conditions
    • Who profits from medical malpractice lawsuits?

      Howard Smith, MD | Physician
    • Healing from the pandemic’s mental toll

      Zamra Amjid, DHSc, MHA | Conditions
    • Choosing the right doctor: How patients can take control of their care [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

Leave a Comment

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

ADVERTISEMENT

  • Most Popular

  • Past Week

    • The dangerous racial bias in dermatology AI

      Alex Siauw | Tech
    • The high cost of PCSK9 inhibitors like Repatha

      Larry Kaskel, MD | Conditions
    • The decline of the doctor-patient relationship

      William Lynes, MD | Physician
    • Diagnosing the epidemic of U.S. violence

      Brian Lynch, MD | Physician
    • A neurosurgeon’s fight with the state medical board [PODCAST]

      The Podcast by KevinMD | Podcast
    • The FQHC model and medicine’s moral promise

      Sami Sinada, MD | Physician
  • Past 6 Months

    • Rethinking the JUPITER trial and statin safety

      Larry Kaskel, MD | Conditions
    • How one physician redesigned her practice to find joy in primary care again [PODCAST]

      The Podcast by KevinMD | Podcast
    • The dangerous racial bias in dermatology AI

      Alex Siauw | Tech
    • When language barriers become a medical emergency

      Monzur Morshed, MD and Kaysan Morshed | Physician
    • A doctor’s struggle with burnout and boundaries

      Humeira Badsha, MD | Physician
    • The stoic cure for modern anxiety

      Osmund Agbo, MD | Physician
  • Recent Posts

    • The FQHC model and medicine’s moral promise

      Sami Sinada, MD | Physician
    • AI companions and loneliness

      Ronke Lawal | Tech
    • The frustrating bureaucracy of getting a vaccine

      Richard A. Lawhern, PhD | Conditions
    • Who profits from medical malpractice lawsuits?

      Howard Smith, MD | Physician
    • Healing from the pandemic’s mental toll

      Zamra Amjid, DHSc, MHA | Conditions
    • Choosing the right doctor: How patients can take control of their care [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Leave a Comment

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...