BG Archive

Archive stuff

  • Archive Copy of Pirate Bay Royal Society Papers Post

    • 2 Sep 2011
    • 0 Responses
    •  views
    • Edit
    • Delete
    • Tags
    • Autopost

     

    -----BEGIN PGP SIGNED MESSAGE-----
    Hash: SHA1
    
      This archive contains 18,592 scientific publications totaling
    33GiB, all from Philosophical Transactions of the Royal Society
    and which should be  available to everyone at no cost, but most
    have previously only been made available at high prices through
    paywall gatekeepers like JSTOR.
    
    Limited access to the  documents here is typically sold for $19
    USD per article, though some of the older ones are available as
    cheaply as $8. Purchasing access to this collection one article
    at a time would cost hundreds of thousands of dollars.
    
    Also included is the basic factual metadata allowing you to
    locate works by title, author, or publication date, and a
    checksum file to allow you to check for corruption.
    
    ef8c02959e947d7f4e4699f399ade838431692d972661f145b782c2fa3ebcc6a sha256sum.txt
    
    I've had these files for a long time, but I've been afraid that if I
    published them I would be subject to unjust legal harassment by those who
    profit from controlling access to these works.
    
    I now feel that I've been making the wrong decision.
    
    On July 19th 2011, Aaron Swartz was criminally charged by the US Attorney
    General's office for, effectively, downloading too many academic papers
    from JSTOR.
    
    Academic publishing is an odd systemΓΓé¼ΓÇ¥the authors are not paid for their
    writing, nor are the peer reviewers (they're just more unpaid academics),
    and in some fields even the journal editors are unpaid. Sometimes the
    authors must even pay the publishers.
    
    And yet scientific publications are some of the most outrageously
    expensive pieces of literature you can buy. In the past, the high access
    fees supported the costly mechanical reproduction of niche paper journals,
    but online distribution has mostly made this function obsolete.
    
    As far as I can tell, the money paid for access today serves little
    significant purpose except to perpetuate dead business models. The
    "publish or perish" pressure in academia gives the authors an impossibly
    weak negotiating position, and the existing system has enormous inertia.
    
    Those with the most power to change the system--the long-tenured luminary
    scholars whose works give legitimacy and prestige to the journals, rather
    than the other way around--are the least impacted by its failures. They
    are supported by institutions who invisibly provide access to all of the
    resources they need. And as the journals depend on them, they may ask
    for alterations to the standard contract without risking their career on
    the loss of a publication offer. Many don't even realize the extent to
    which academic work is inaccessible to the general public, nor do they
    realize what sort of work is being done outside universities that would
    benefit by it.
    
    Large publishers are now able to purchase the political clout needed
    to abuse the narrow commercial scope of copyright protection, extending
    it to completely inapplicable areas: slavish reproductions of historic
    documents and art, for example, and exploiting the labors of unpaid
    scientists. They're even able to make the taxpayers pay for their
    attacks on free society by pursuing criminal prosecution (copyright has
    classically been a civil matter) and by burdening public institutions
    with outrageous subscription fees.
    
    Copyright is a legal fiction representing a narrow compromise: we give
    up some of our natural right to exchange information in exchange for
    creating an economic incentive to author, so that we may all enjoy more
    works. When publishers abuse the system to prop up their existence,
    when they misrepresent the extent of copyright coverage, when they use
    threats of frivolous litigation to suppress the dissemination of publicly
    owned works, they are stealing from everyone else.
    
    Several years ago I came into possession, through rather boring and
    lawful means, of a large collection of JSTOR documents.
    
    These particular documents are the historic back archives of the
    Philosophical Transactions of the Royal SocietyΓΓé¼ΓÇ¥a prestigious scientific
    journal with a history extending back to the 1600s.
    
    The portion of the collection included in this archive, ones published
    prior to 1923 and therefore obviously in the public domain, total some
    18,592 papers and 33 gigabytes of data.
    
    The documents are part of the shared heritage of all mankind,
    and are rightfully in the public domain, but they are not available
    freely. Instead the articles are available at $19 each--for one month's
    viewing, by one person, on one computer. It's a steal. From you.
    
    When I received these documents I had grand plans of uploading them to
    Wikipedia's sister site for reference works, WikisourceΓΓé¼ΓÇ¥ where they
    could be tightly interlinked with Wikipedia, providing interesting
    historical context to the encyclopedia articles. For example, Uranus
    was discovered in 1781 by William Herschel; why not take a look at
    the paper where he originally disclosed his discovery? (Or one of the
    several follow on publications about its satellites, or the dozens of
    other papers he authored?)
    
    But I soon found the reality of the situation to be less than appealing:
    publishing the documents freely was likely to bring frivolous litigation
    from the publishers.
    
    As in many other cases, I could expect them to claim that their slavish
    reproductionΓΓé¼ΓÇ¥scanning the documentsΓΓé¼ΓÇ¥ created a new copyright
    interest. Or that distributing the documents complete with the trivial
    watermarks they added constituted unlawful copying of that mark. They
    might even pursue strawman criminal charges claiming that whoever obtained
    the files must have violated some kind of anti-hacking laws.
    
    In my discreet inquiry, I was unable to find anyone willing to cover
    the potentially unbounded legal costs I risked, even though the only
    unlawful action here is the fraudulent misuse of copyright by JSTOR and
    the Royal Society to withhold access from the public to that which is
    legally and morally everyone's property.
    
    In the meantime, and to great fanfare as part of their 350th anniversary,
    the RSOL opened up "free" access to their historic archivesΓΓé¼ΓÇ¥but "free"
    only meant "with many odious terms", and access was limited to about
    100 articles.
    
    All too often journals, galleries, and museums are becoming not
    disseminators of knowledgeΓΓé¼ΓÇ¥as their lofty mission statements
    suggestΓΓé¼ΓÇ¥but censors of knowledge, because censoring is the one thing
    they do better than the Internet does. Stewardship and curation are
    valuable functions, but their value is negative when there is only one
    steward and one curator, whose judgment reigns supreme as the final word
    on what everyone else sees and knows. If their recommendations have value
    they can be heeded without the coercive abuse of copyright to silence 
    competition.
    
    The liberal dissemination of knowledge is essential to scientific
    inquiry. More than in any other area, the application of restrictive
    copyright is inappropriate for academic works: there is no sticky question
    of how to pay authors or reviewers, as the publishers are already not
    paying them. And unlike 'mere' works of entertainment, liberal access
    to scientific work impacts the well-being of all mankind. Our continued
    survival may even depend on it.
    
    If I can remove even one dollar of ill-gained income from a poisonous
    industry which acts to suppress scientific and historic understanding,
    then whatever personal cost I suffer will be justifiedΓΓé¼ΓÇ¥it will be one
    less dollar spent in the war against knowledge. One less dollar spent
    lobbying for laws that make downloading too many scientific papers
    a crime.
    
    I had considered releasing this collection anonymously, but others pointed
    out that the obviously overzealous prosecutors of Aaron Swartz would
    probably accuse him of it and add it to their growing list of ridiculous
    charges. This didn't sit well with my conscience, and I generally believe
    that anything worth doing is worth attaching your name to.
    
    I'm interested in hearing about any enjoyable discoveries or even useful
    applications which come of this archive.
    
    - ---- 
    Greg Maxwell - July 20th 2011
    gmaxwell@gmail.com  Bitcoin: 14csFEJHk3SYbkBmajyJ3ktpsd2TmwDEBb
    
    -----BEGIN PGP SIGNATURE-----
    Version: GnuPG v1.4.11 (GNU/Linux)
    
    iEYEARECAAYFAk4nlfwACgkQrIWTYrBBO/pK4QCfV/voN6IdZRU36Vy3xAedUMfz
    rJcAoNF4/QTdxYscvF2nklJdMzXFDwtF
    =YlVR
    -----END PGP SIGNATURE-----
    • Tweet
  • "First targeted treatment success for Duchenne Muscular Dystrophy" - archive copy

    • 29 Jul 2011
    • 0 Responses
    •  views
    • Edit
    • Delete
    • Tags
    • Autopost

    GOSH have changed the text of their press release on their website (4 days after it went out).

    Here is an archive copy of the press release as it went out:

     

    First targeted treatment success for Duchenne Muscular Dystrophy

    http://www.gosh.nhs.uk/pressoffice/pressrelease_00954


    A team led by scientists at the UCL Institute of Child Health (ICH), funded by the Medical Research Council (MRC) and AVI BioPharma, have made an important breakthrough in the development of a treatment for Duchenne Muscular Dystrophy (DMD).

     

    Together with the MDEX Consortium, chaired by the ICH’s ProfessorFrancesco Muntoni, the group showed that a gene-based drug treatment was effective in restoring the dystrophin protein that is missing in sufferers of DMD, in seven out of 19 trial participants.

     

    DMD is a devastating and life-limiting condition that affects one in 3,500 male births in the general population, with around 100 cases diagnosed in the UK each year.

     

    Three of the participants in the two highest dose cohorts showed dystrophin levels that exceeded 18 per cent of those found in normal muscle cells.  There was significant statistical increase across the cohorts.

     

    Thirteen per cent of boys with DMD could be treated with this gene specific, exon-skipping therapy, the largest group by a single antisense.  Overall scientists say this approach could work for at least 70 per cent of DMD sufferers.

     

    DMD causes progressive muscle weakness due to the breakdown and loss of muscle cells. Patients lack a single important protein in their muscle fibres called dystrophin. By the ages of eight to 12, boys become unable to walk and by their late teens or early twenties the condition can become severe enough to limit life expectancy.

     

    In this clinical trial of 19 patients, study participants aged five to 15 at Great Ormond Street Hospital and the Royal Victoria Infirmary, Newcastle, were given weekly doses of the drug, AVI-4658.  The drug had already been tested for safety and efficacy by the MDEX Consortium and AVI Biopharma in an earlier phase of the study (Kinali et al, Lancet Neurol 2009).

     

    Francesco Muntoni, professor of paediatric neurology at the ICH, said: “These are very exciting results that prove the case for an even more detailed look at this genetic therapy. I’ve worked with patients with DMD for many years and this is the first time we can say with confidence that we’ve made a significant breakthrough towards finding a targeted treatment.

     

    “Importantly, the study drug was extremely well tolerated, with no appreciable side effects detected during the study period in any of the boys. If our strategy shows continued success, this therapy could substantially reduce muscle damage in affected boys with DMD, improve the quality of life for DMD patients, their mobility and the way their condition is managed as they get older.”

     

    Professor Max Parmar, director of the MRC Clinical Trials Unit, said: “A large proportion of new drugs do not make it past the phase II stage of testing reached here, so there is real excitement that this treatment could work. This is a great example of partnership between the Medical Research Council, industry, universities and the NHS, undertaking experimental studies in the clinic with the potential to bring real benefits to patients and their families. What this encourages us to do now is conduct larger, longer term studies. These will enable us to see whether this drug, which brings expertise in genetics and chemistry together, can make a major long-term difference to the quality and length of life for boys with this devastating disease.”

     

    Brothers Jack, 11, and Tom Bosanquet, 8, were enrolled on the trial. Both have DMD with a deletion from exons 45-50. Their mum, Claire, said:

     

    “The diagnosis of DMD came as a complete shock, neither me nor my husband Ian had heard of the condition before. Receiving the diagnosis was like falling into a black hole, you don’t know how you will cope and you really feel like your whole world will fall apart.

     

    “Jack and Tom were placed on a DMD genetic registry, co-ordinated by Action Duchenne, which is how we were approached about the clinical trial at Great Ormond Street Hospital. Enrolling was a no brainer for us, we felt from the outset that by taking part we were getting some control over something which for so long had been completely out of our hands. We felt, at last, we could do something positive about something negative.

     

    “Coming to the hospital was amazing; we knew we were at one of the best children’s hospitals in the world with access to some of the most experienced health care professionals.

     

    “The boys were on the trial for 12 weeks between 2009 and 2010. Our whole family noticed a marked difference in their quality of life and mobility over that period.We feel that it helped prolong Jack’s mobility and that Tom has been considerably less fatigued.”

     

    The Muscular Dystrophy Campaign spearheaded the development of this gene based drug treatment over 20 years ago, and has invested over two million pounds into research since the early 1990’s.

    Contact information:

     

    For further information, including case studies, please contact Hayley Dodman or Stephen Cox, Great Ormond Street Hospital press office on 0207 239 3126/3119 or email dodmah@gosh.nhs.uk / coxs@gosh.nhs.uk

     

    For genuine and urgent out of hours call speak to switchboard on 020 7405 9200

    Notes to editors:

     

    Supporting statements

     

    Dr Marita Pohlschmidt, director of the Muscular Dystrophy Campaign said:

    "We have fought to find a treatment for this devastating condition for the past 50 years. Today we can say with real confidence that we're going to win that battle. Parents of these boys can have real hope for the future."

     

    Notes to editor

     

       1. The ‘gene based, exon-skipping drug treatment’ was effected by an antisense oligonucleotide that restores production of dystrophin protein

       2. The MDEX consortium led by Professor Francesco Muntoni, is a multidisciplinary enterprise to promote translational research into muscular dystrophies, and is formed by the clinical groups of Professor Francesco Muntoni (UCL Institute of Child Health) and Professor Kate Bushby and Professor Volker Straub (Newcastle University), and scientists from The Royal Veterinary College, London (Professor Dominic Wells), UCL Institute of Child Health (Dr. Jennifer Morgan), Royal Holloway University of London (Professor George Dickson), Oxford University (Dr. Matthew Wood) and University of Western Australia (Professor Steve Wilton).  In addition, the charities Muscular Dystrophy Campaign (MDC), Action Duchenne and Duchenne Family Support Group also participate in the Consortium.  For more information, visit www.mdex.org.uk

       3. For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists. It has produced 29 Nobel Prize winners and sustains a flourishing environment for internationally recognised research. The MRC focuses on making an impact and provides the financial muscle and scientific expertise behind medical breakthroughs, including one of the first antibiotics penicillin, the structure of DNA and the lethal link between smoking and cancer. Today MRC funded scientists tackle research into the major health challenges of the 21st century. www.mrc.ac.uk

       4. AVI BioPharma is focused on the discovery and development of novel RNA-based therapeutics for rare and infectious diseases, as well as other select disease targets. Applying pioneering technologies developed and optimized by AVI, the Company is able to target a broad range of diseases and disorders through distinct RNA-based mechanisms of action. Unlike other RNA-based approaches, AVI's technologies can be used to directly target both messenger RNA (mRNA) and precursor messenger RNA (pre-mRNA) to either down-regulate (inhibit) or up-regulate (promote) the expression of targeted genes or proteins. By leveraging a highly differentiated RNA-based technology platform, AVI has built a pipeline of potentially transformative therapeutic agents, including eteplirsen, which is in clinical development for the treatment of Duchenne muscular dystrophy, and multiple drug candidates that are in clinical development for the treatment of infectious diseases. For more information, visit www.avibio.com

       5. Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy.  The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition.  This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.  For more information please visit: www.actionduchenne.org

       6. Muscular Dystrophy Campaign.  Our work has five main focuses: we fund world-class research to find effective treatments and cures, we provide practical information, advice and emotional support for individuals with muscle and nerve disease, their carers and families, we campaign to bring about change and raise awareness of muscle and nerve disease, we award grants towards the cost of specialist equipment, such as powered wheelchairs we provide specialist education and development for health professionals

    ________________________________

    • Tweet
  • About

    I like stats. I'm a doctor. I write about dodgy scientific claims in my spare time.

    This isn't my main blog. Find me here:

    Blog:
    www.badscience.net/

    Book:
    http://www.amazon.co.uk/Bad-Science-Ben-Goldacre/dp/000728487X/?tag=bs0b-21

    Tweet:
    www.twitter.com/bengoldacre

    TED talk:
    http://www.ted.com/talks/ben_goldacre_battling_bad_science.html

    884 Views
  • Archive

    • 2011 (2)
      • September (1)
      • July (1)

    Get Updates

    Subscribe via RSS