Data sharing across biobanks: epistemic values, data mutability and data incommensurability
被引:10
|
作者:
Demir, Ipek
论文数: 0引用数: 0
h-index: 0
机构:
Univ Leicester, Data Knowledge Res Grp 2, Leicester, Leics, EnglandUniv Leicester, Data Knowledge Res Grp 2, Leicester, Leics, England
Demir, Ipek
[1
]
Murtagh, Madeleine J.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Leicester, Data Knowledge Res Grp 2, Leicester, Leics, England
Univ Bristol, Sch Social & Community Med, Data Knowledge Res Grp 2, Bristol, Avon, EnglandUniv Leicester, Data Knowledge Res Grp 2, Leicester, Leics, England
Murtagh, Madeleine J.
[1
,2
]
机构:
[1] Univ Leicester, Data Knowledge Res Grp 2, Leicester, Leics, England
[2] Univ Bristol, Sch Social & Community Med, Data Knowledge Res Grp 2, Bristol, Avon, England
biobank data sharing;
epistemic values;
incommensurability;
GENETICS;
SCIENCE;
ETHICS;
TIME;
D O I:
10.1080/14636778.2013.846582
中图分类号:
Q81 [生物工程学(生物技术)];
Q93 [微生物学];
学科分类号:
071005 ;
0836 ;
090102 ;
100705 ;
摘要:
Despite the centrality of epistemic issues in biobank knowledge generation, there is currently a lacuna in research addressing the epistemic assumptions of biobank science and data sharing. The article addresses this lacuna. Using the insights of philosophical and sociological analysis, we examine standardization and harmonization and central challenges biobank data-sharing faces. We defend two central epistemic values, namely spatial and temporal translatability and epistemic adequacy which foster effective biobank knowledge generation. The first refers to the way in which biobank data need to be re-usable and re-purposable by bioscience researchers who did not create them. Given the perennial issues of data mutability and incommensurability, we also propose epistemic adequacy. In uncovering the social and epistemic foundations of biobank science, we emphasize issues essential for achieving effective and transparent biobank practice and productive communication and engagement with the public about the nature, potential and limits of biobanks.
机构:
Commissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Univ Calif Berkeley, Brain Imaging Ctr, Berkeley, CA 94720 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Poline, Jean-Baptiste
Breeze, Janis L.
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机构:
Karolinska Inst, Int Neuroinformat Coordinating Facil, Stockholm, SwedenCommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Breeze, Janis L.
Ghosh, Satrajit
论文数: 0引用数: 0
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机构:
MIT, McGovern Inst Brain Res, Cambridge, MA 02139 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Ghosh, Satrajit
Gorgolewski, Krzysztof
论文数: 0引用数: 0
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机构:
Univ Edinburgh, Sch Informat, Edinburgh, Midlothian, ScotlandCommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Gorgolewski, Krzysztof
Halchenko, Yaroslav O.
论文数: 0引用数: 0
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机构:
Dartmouth Coll, Dept Psychol & Brain Sci, Hanover, NH 03755 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Halchenko, Yaroslav O.
Hanke, Michael
论文数: 0引用数: 0
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机构:
Univ Magdeburg, Dept Expt Psychol, D-39106 Magdeburg, GermanyCommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Hanke, Michael
Haselgrove, Christian
论文数: 0引用数: 0
h-index: 0
机构:
Univ Massachusetts, Sch Med, Dept Psychiat, Div Informat, Worcester, MA 01655 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Haselgrove, Christian
Helmer, Karl G.
论文数: 0引用数: 0
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机构:
Harvard Univ, Massachusetts Gen Hosp, Sch Med, Boston, MA USA
Harvard Univ, Sch Med, Dept Radiol, Athinoula A Martinos Ctr Biomed Imaging, Boston, MA 02115 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Helmer, Karl G.
Keator, David B.
论文数: 0引用数: 0
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机构:
Univ Calif Irvine, Dept Psychiat & Human Behav, Irvine, CA 92717 USA
Univ Calif Irvine, Dept Comp Sci, Irvine, CA 92717 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Keator, David B.
Marcus, Daniel S.
论文数: 0引用数: 0
h-index: 0
机构:
Washington Univ, Sch Med, Dept Radiol, St Louis, MO 63110 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Marcus, Daniel S.
Poldrack, Russell A.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Texas Austin, Imaging Res Ctr, Austin, TX 78712 USA
Univ Texas Austin, Dept Psychol, Austin, TX 78712 USA
Univ Texas Austin, Dept Neurobiol, Austin, TX 78712 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Poldrack, Russell A.
Schwartz, Yannick
论文数: 0引用数: 0
h-index: 0
机构:
Commissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, FranceCommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Schwartz, Yannick
Ashburner, John
论文数: 0引用数: 0
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机构:
Wellcome Trust Ctr Neuroimaging, London, EnglandCommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
Ashburner, John
Kennedy, David N.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Massachusetts, Sch Med, Dept Psychiat, Div Informat, Worcester, MA 01655 USACommissariat Energie Atom & Energies, Neurospin, Gif Sur Yvette, France
机构:
Massachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Harvard Ctr Populat & Dev Studies, Cambridge, MA USA
Mbarara Univ Sci & Technol, Mbarara, UgandaMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Tsai, Alexander C.
Kohrt, Brandon A.
论文数: 0引用数: 0
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机构:
Duke Univ, Duke Global Hlth Inst, Durham, NC USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Kohrt, Brandon A.
Matthews, Lynn T.
论文数: 0引用数: 0
h-index: 0
机构:
Massachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Matthews, Lynn T.
Betancourt, Theresa S.
论文数: 0引用数: 0
h-index: 0
机构:
Harvard Ctr Populat & Dev Studies, Cambridge, MA USA
Harvard TH Chan Sch Publ Hlth, Dept Global Hlth & Populat, Boston, MA USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Betancourt, Theresa S.
Lee, Jooyoung K.
论文数: 0引用数: 0
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机构:
Univ Toronto, Dept Sociol, Toronto, ON, CanadaMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Lee, Jooyoung K.
Papachristos, Andrew V.
论文数: 0引用数: 0
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机构:
Yale Univ, Dept Sociol, New Haven, CT USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Papachristos, Andrew V.
Weiser, Sheri D.
论文数: 0引用数: 0
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机构:
Univ Calif San Francisco, Dept Med, San Francisco, CA 94143 USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
Weiser, Sheri D.
Dworkin, Shari L.
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机构:
Univ Calif San Francisco, Sch Nursing, Dept Social & Behav Sci, San Francisco, CA 94143 USAMassachusetts Gen Hosp, Div Global Psychiat, Boston, MA 02114 USA
机构:
London Sch Hyg & Trop Med, Fac Epidemiol & Populat Hlth, London WC1, England
Massey Univ, Ctr Publ Hlth Res, Wellington 6140, New ZealandLondon Sch Hyg & Trop Med, Fac Epidemiol & Populat Hlth, London WC1, England
Pearce, Neil
Smith, Allan H.
论文数: 0引用数: 0
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机构:
Univ Calif Berkeley, Sch Publ Hlth, Div Epidemiol, Berkeley, CA 94720 USALondon Sch Hyg & Trop Med, Fac Epidemiol & Populat Hlth, London WC1, England