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The ethics of participant-led biomedical research

Nature Biotechnology volume 31, pages 786–787 (2013)Cite this article

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To the Editor:

In 2011, Nature Biotechnology published an article on the effects of lithium on patients suffering from amyotrophic lateral sclerosis1. The study was unusual in being initiated and conducted by patients belonging to the online community PatientsLikeMe (http://www.patientslikeme.com/). It was completed with the assistance of PatientsLikeMe researchers who developed an algorithm for matching controls and wrote up the research for publication. The finding that lithium had no positive effect was subsequently confirmed by larger standard clinical trials.

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Authors and Affiliations

  1. University of Zurich, Zurich, Switzerland

    Effy Vayena

  2. University College London, London, UK

    John Tasioulas

Authors
  1. Effy Vayena
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  2. John Tasioulas
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Correspondence to Effy Vayena.

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The authors declare no competing financial interests.

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Vayena, E., Tasioulas, J. The ethics of participant-led biomedical research. Nat Biotechnol 31, 786–787 (2013). https://doi.org/10.1038/nbt.2692

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