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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. Research

    Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

    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...

    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

    Genome Medicine 2014 6:69

    Published on: 17 September 2014

  2. Research

    Re-contacting participants for inclusion in the database of Genotypes and Phenotypes (dbGaP): Findings from three case-control studies of lung cancer

    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...

    Michele L Cote, M Jay Harrison, Angela S Wenzlaff and Ann G Schwartz

    Genome Medicine 2014 6:54

    Published on: 23 July 2014

  3. Review

    ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

    Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELS...

    Go Yoshizawa, Calvin Wai-Loon Ho, Wei Zhu, Chingli Hu, Yoni Syukriani, Ilhak Lee, Hannah Kim, Daniel Fu Chang Tsai, Jusaku Minari and Kazuto Kato

    Genome Medicine 2014 6:39

    Published on: 30 May 2014

  4. Research

    Returning individual research results for genome sequences of pancreatic cancer

    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...

    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

    Genome Medicine 2014 6:42

    Published on: 29 May 2014

  5. Open debate

    Harvard Personal Genome Project: lessons from participatory public research

    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...

    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

    Genome Medicine 2014 6:10

    Published on: 28 February 2014

  6. Open debate

    Disentangling Public Participation In Science and Biomedicine

    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...

    Christopher Kelty and Aaron Panofsky

    Genome Medicine 2014 6:8

    Published on: 31 January 2014

  7. Q and A

    iPOP and its role in participatory medicine

    Michael Snyder shares his thoughts on participatory medicine and how omics profiling could fit into this new model of healthcare where patients are at the center of medicine.

    Michael Snyder

    Genome Medicine 2014 6:6

    Published on: 30 January 2014

  8. Research

    Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study

    Multiple laboratories now offer clinical whole genome sequencing (WGS). We anticipate WGS becoming routinely used in research and clinical practice. Many institutions are exploring how best to educate genetici...

    Saskia C Sanderson, Michael D Linderman, Andrew Kasarskis, Ali Bashir, George A Diaz, Milind C Mahajan, Hardik Shah, Melissa Wasserstein, Randi E Zinberg, Micol Zweig and Eric E Schadt

    Genome Medicine 2013 5:113

    Published on: 30 December 2013