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Participatory Medicine

Guest editors: Charles Auffray and Leroy Hood

 Genomic medicine is promoting a paradigm shift in healthcare. In this new concept of healthcare, clinician and patient are part of the same team. Patients are empowered by more available information, and take a more active and responsible role, while clinicians welcome them as knowledgeable partners in clinical practice. Genome Medicine presents a thematic series focusing on Participatory Medicine. The series includes comment, review and research articles that provide an overview of the state-of-the-art of this new model of healthcare.

Learn more about participatory medicine in the podcast.

This collection of articles has not been sponsored and articles have undergone the journal’s standard peer-review process. The Guest Editors declare no competing interests.

  1. Effectively educating families about the risks and benefits of genomic tests such as whole exome sequencing (WES) offers numerous challenges, including the complexity of test results and potential loss of priv...

    Authors: Sarah Scollon, Katie Bergstrom, Robin A Kerstein, Tao Wang, Susan G Hilsenbeck, Uma Ramamurthy, Richard A Gibbs, Christine M Eng, Murali M Chintagumpala, Stacey L Berg, Laurence B McCullough, Amy L McGuire, Sharon E Plon and D Williams Parsons
    Citation: Genome Medicine 2014 6:69
  2. Since January 2008, the National Institutes of Health (NIH) has required that all investigators who receive NIH support submit de-identified high-throughput genomic data to the database of Genotypes and Phenot...

    Authors: Michele L Cote, M Jay Harrison, Angela S Wenzlaff and Ann G Schwartz
    Citation: Genome Medicine 2014 6:54
  3. Disclosure of individual results to participants in genomic research is a complex and contentious issue. There are many existing commentaries and opinion pieces on the topic, but little empirical data concerni...

    Authors: Amber L Johns, David K Miller, Skye H Simpson, Anthony J Gill, Karin S Kassahn, Jeremy L Humphris, Jaswinder S Samra, Katherine Tucker, Lesley Andrews, David K Chang, Nicola Waddell, Marina Pajic, John V Pearson, Sean M Grimmond, Andrew V Biankin and Nikolajs Zeps
    Citation: Genome Medicine 2014 6:42
  4. Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifi...

    Authors: Madeleine P Ball, Jason R Bobe, Michael F Chou, Tom Clegg, Preston W Estep, Jeantine E Lunshof, Ward Vandewege, Alexander Wait Zaranek and George M Church
    Citation: Genome Medicine 2014 6:10
  5. This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven ‘dimensions’ of participation that are most frequentl...

    Authors: Christopher Kelty and Aaron Panofsky
    Citation: Genome Medicine 2014 6:8