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@ARTICLE{Rahimzadeh:132945,
      author       = {V. Rahimzadeh and C. Schickhardt and B. M. Knoppers and K.
                      Sénécal and D. F. Vears and C. V. Fernandez and S.
                      Pfister$^*$ and S. Plon and S. Terry and J. Williams and M.
                      S. Williams and M. Cornel and J. M. Friedman},
      title        = {{K}ey {I}mplications of {D}ata {S}haring in {P}ediatric
                      {G}enomics.},
      journal      = {JAMA pediatrics},
      volume       = {172},
      number       = {5},
      issn         = {2168-6203},
      address      = {Chicago, Ill.},
      publisher    = {American Medical Association},
      reportid     = {DKFZ-2018-00584},
      pages        = {476-481},
      year         = {2018},
      abstract     = {Accurate clinical interpretation of children's whole-genome
                      and whole-exome sequences relies on comparing the patient's
                      linked genomic and phenotypic data with variant reference
                      databases of both healthy and affected patients. The
                      robustness of such comparisons, in turn, is made possible by
                      sharing pediatric genomic and associated clinical data.
                      Despite this, sparse ethical-legal policy attention has been
                      paid to making such sharing routine in practice. The
                      interdisciplinary Paediatric Task Team of the Global
                      Alliance for Genomics and Health considered in detail the
                      current ethical, legal, and social implications of sharing
                      genomic and associated clinical data involving children. An
                      initial set of points to consider was presented at a meeting
                      of the Paediatric Task Team at the 4th Plenary of the Global
                      Alliance for Genomics and Health. The Key Implications for
                      Data Sharing (KIDS) framework for pediatric genomics was
                      developed based on feedback from this group and was
                      supplemented by findings from a critical appraisal of the
                      data-sharing literature. The final points to consider that
                      comprise the KIDS framework are categorized into the
                      following 4 primary themes: children's involvement, parental
                      consent, balancing benefits and risks, and data protection
                      and release requirements.},
      subtyp        = {Review Article},
      cin          = {B062},
      ddc          = {610},
      cid          = {I:(DE-He78)B062-20160331},
      pnm          = {312 - Functional and structural genomics (POF3-312)},
      pid          = {G:(DE-HGF)POF3-312},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:29554172},
      doi          = {10.1001/jamapediatrics.2017.5500},
      url          = {https://inrepo02.dkfz.de/record/132945},
}