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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.
Sanderson, Saskia C; Brothers, Kyle B; Mercaldo, Nathaniel D; Clayton, Ellen Wright; Antommaria, Armand H Matheny; Aufox, Sharon A; Brilliant, Murray H; Campos, Diego; Carrell, David S; Connolly, John; Conway, Pat; Fullerton, Stephanie M; Garrison, Nanibaa' A; Horowitz, Carol R; Jarvik, Gail P; Kaufman, David; Kitchner, Terrie E; Li, Rongling; Ludman, Evette J; McCarty, Catherine A; McCormick, Jennifer B; McManus, Valerie D; Myers, Melanie F; Scrol, Aaron; Williams, Janet L; Shrubsole, Martha J; Schildcrout, Jonathan S; Smith, Maureen E; Holm, Ingrid A.
Afiliação
  • Sanderson SC; Department of Behavioural Science and Health, University College London, London WC1E 6BT, UK; Great Ormond Street Hospital, London WC1N 3JH, UK; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA. Electronic address: saskia.sanderson@ucl.ac.
  • Brothers KB; Department of Pediatrics, University of Louisville, Louisville, KY 40202, USA. Electronic address: kyle.brothers@louisville.edu.
  • Mercaldo ND; Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
  • Clayton EW; Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN 37203, USA.
  • Antommaria AHM; Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
  • Aufox SA; Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
  • Brilliant MH; Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
  • Campos D; Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
  • Carrell DS; Group Health Research Institute, Seattle, WA 98101, USA.
  • Connolly J; Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
  • Conway P; Essentia Institute of Rural Health, Duluth, MN 55805, USA.
  • Fullerton SM; Department of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.
  • Garrison NA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA 98101, USA; Department of Pediatrics, Division of Bioethics, University of Washington, Seattle, WA 98101, USA.
  • Horowitz CR; Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA.
  • Jarvik GP; Department of Genome Sciences, University of Washington, Seattle, WA 98195, USA.
  • Kaufman D; Division of Genomics and Society, National Human Genome Research Institute, Bethesda, MD 20892, USA.
  • Kitchner TE; Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
  • Li R; Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD 20892, USA.
  • Ludman EJ; Group Health Research Institute, Seattle, WA 98101, USA.
  • McCarty CA; Essentia Institute of Rural Health, Duluth, MN 55805, USA.
  • McCormick JB; Biomedical Ethics Program, Mayo Clinic, Rochester, MN 55905, USA.
  • McManus VD; Biomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
  • Myers MF; Genetic Counseling Graduate Program, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH 45229, USA.
  • Scrol A; Group Health Research Institute, Seattle, WA 98101, USA.
  • Williams JL; Genomic Medicine Institute, Geisinger Health System, Danville, PA 17822, USA.
  • Shrubsole MJ; Vanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37203, USA.
  • Schildcrout JS; Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
  • Smith ME; Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
  • Holm IA; Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, USA.
Am J Hum Genet ; 100(3): 414-427, 2017 Mar 02.
Article em En | MEDLINE | ID: mdl-28190457
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Opinião Pública / Bancos de Espécimes Biológicos / Disseminação de Informação / Consentimento Livre e Esclarecido Tipo de estudo: Clinical_trials / Prognostic_studies Limite: Adolescent / Adult / Aged / Female / Humans / Male / Middle aged País/Região como assunto: America do norte Idioma: En Ano de publicação: 2017 Tipo de documento: Article
Texto completo
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XML
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Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Opinião Pública / Bancos de Espécimes Biológicos / Disseminação de Informação / Consentimento Livre e Esclarecido Tipo de estudo: Clinical_trials / Prognostic_studies Limite: Adolescent / Adult / Aged / Female / Humans / Male / Middle aged País/Região como assunto: America do norte Idioma: En Ano de publicação: 2017 Tipo de documento: Article