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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

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Title: Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.
Authors: 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.uk., 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.
Source: American journal of human genetics [Am J Hum Genet] 2017 Mar 02; Vol. 100 (3), pp. 414-427. Date of Electronic Publication: 2017 Feb 09.
Publication Type: Journal Article; Multicenter Study; Randomized Controlled Trial
Journal Info: Publisher: Cell Press Country of Publication: United States NLM ID: 0370475 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1537-6605 (Electronic) Linking ISSN: 00029297 NLM ISO Abbreviation: Am J Hum Genet Subsets: MEDLINE
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  Data: <searchLink fieldCode="AU" term="%22Sanderson+SC%22">Sanderson SC</searchLink>; 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.uk.<br /><searchLink fieldCode="AU" term="%22Brothers+KB%22">Brothers KB</searchLink>; Department of Pediatrics, University of Louisville, Louisville, KY 40202, USA. Electronic address: kyle.brothers@louisville.edu.<br /><searchLink fieldCode="AU" term="%22Mercaldo+ND%22">Mercaldo ND</searchLink>; Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.<br /><searchLink fieldCode="AU" term="%22Clayton+EW%22">Clayton EW</searchLink>; Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN 37203, USA.<br /><searchLink fieldCode="AU" term="%22Antommaria+AHM%22">Antommaria AHM</searchLink>; Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.<br /><searchLink fieldCode="AU" term="%22Aufox+SA%22">Aufox SA</searchLink>; Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.<br /><searchLink fieldCode="AU" term="%22Brilliant+MH%22">Brilliant MH</searchLink>; Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.<br /><searchLink fieldCode="AU" term="%22Campos+D%22">Campos D</searchLink>; Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.<br /><searchLink fieldCode="AU" term="%22Carrell+DS%22">Carrell DS</searchLink>; Group Health Research Institute, Seattle, WA 98101, USA.<br /><searchLink fieldCode="AU" term="%22Connolly+J%22">Connolly J</searchLink>; Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.<br /><searchLink fieldCode="AU" term="%22Conway+P%22">Conway P</searchLink>; Essentia Institute of Rural Health, Duluth, MN 55805, USA.<br /><searchLink fieldCode="AU" term="%22Fullerton+SM%22">Fullerton SM</searchLink>; Department of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.<br /><searchLink fieldCode="AU" term="%22Garrison+NA%22">Garrison NA</searchLink>; 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.<br /><searchLink fieldCode="AU" term="%22Horowitz+CR%22">Horowitz CR</searchLink>; Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA.<br /><searchLink fieldCode="AU" term="%22Jarvik+GP%22">Jarvik GP</searchLink>; Department of Genome Sciences, University of Washington, Seattle, WA 98195, USA.<br /><searchLink fieldCode="AU" term="%22Kaufman+D%22">Kaufman D</searchLink>; Division of Genomics and Society, National Human Genome Research Institute, Bethesda, MD 20892, USA.<br /><searchLink fieldCode="AU" term="%22Kitchner+TE%22">Kitchner TE</searchLink>; Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.<br /><searchLink fieldCode="AU" term="%22Li+R%22">Li R</searchLink>; Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD 20892, USA.<br /><searchLink fieldCode="AU" term="%22Ludman+EJ%22">Ludman EJ</searchLink>; Group Health Research Institute, Seattle, WA 98101, USA.<br /><searchLink fieldCode="AU" term="%22McCarty+CA%22">McCarty CA</searchLink>; Essentia Institute of Rural Health, Duluth, MN 55805, USA.<br /><searchLink fieldCode="AU" term="%22McCormick+JB%22">McCormick JB</searchLink>; Biomedical Ethics Program, Mayo Clinic, Rochester, MN 55905, USA.<br /><searchLink fieldCode="AU" term="%22McManus+VD%22">McManus VD</searchLink>; Biomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.<br /><searchLink fieldCode="AU" term="%22Myers+MF%22">Myers MF</searchLink>; Genetic Counseling Graduate Program, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH 45229, USA.<br /><searchLink fieldCode="AU" term="%22Scrol+A%22">Scrol A</searchLink>; Group Health Research Institute, Seattle, WA 98101, USA.<br /><searchLink fieldCode="AU" term="%22Williams+JL%22">Williams JL</searchLink>; Genomic Medicine Institute, Geisinger Health System, Danville, PA 17822, USA.<br /><searchLink fieldCode="AU" term="%22Shrubsole+MJ%22">Shrubsole MJ</searchLink>; Vanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37203, USA.<br /><searchLink fieldCode="AU" term="%22Schildcrout+JS%22">Schildcrout JS</searchLink>; Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.<br /><searchLink fieldCode="AU" term="%22Smith+ME%22">Smith ME</searchLink>; Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.<br /><searchLink fieldCode="AU" term="%22Holm+IA%22">Holm IA</searchLink>; Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, USA.
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  Data: <searchLink fieldCode="JN" term="%220370475%22">American journal of human genetics</searchLink> [Am J Hum Genet] 2017 Mar 02; Vol. 100 (3), pp. 414-427. <i>Date of Electronic Publication: </i>2017 Feb 09.
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