Literature DB >> 30994077

Who Owns the Data in a Medical Information Commons?

Amy L McGuire1, Jessica Roberts1, Sean Aas1, Barbara J Evans1.   

Abstract

In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons (MIC) and what rights and interests ought to be recognized when developing a governance structure for an MIC. We then examine the legitimacy of these claims based on legal and ethical analysis and explore an alternative framework for thinking about participants' rights and interests in an MIC.

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Year:  2019        PMID： 30994077      PMCID： PMC6727646          DOI： 10.1177/1073110519840485

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  13 in total

1.  Unpatients-why patients should own their medical data.

Authors:  Leonard J Kish; Eric J Topol
Journal:  Nat Biotechnol       Date:  2015-09       Impact factor: 54.908

Review 2.  Bodily rights and property rights.

Authors:  B Björkman; S O Hansson
Journal:  J Med Ethics       Date:  2006-04       Impact factor: 2.903

3.  Ownership of medical information.

Authors:  Mark A Hall; Kevin A Schulman
Journal:  JAMA       Date:  2009-03-25       Impact factor: 56.272

4.  Research on medical records without informed consent.

Authors:  Franklin G Miller
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

5.  The Pathway to Patient Data Ownership and Better Health.

Authors:  Katherine A Mikk; Harry A Sleeper; Eric J Topol
Journal:  JAMA       Date:  2017-10-17       Impact factor: 56.272

6.  Property rights in genetic information.

Authors:  Richard A Spinello
Journal:  Ethics Inf Technol       Date:  2004

7.  Challenging the Sanctity of Donorism: Patient Tissue Providers as Payment-Worthy Contributors.

Authors:  Rebecca A Johnson; David Wendler
Journal:  Kennedy Inst Ethics J       Date:  2015-09

8.  What is a Medical Information Commons?

Authors:  Juli M Bollinger; Peter D Zuk; Mary A Majumder; Erika Versalovic; Angela G Villanueva; Rebecca L Hsu; Amy L McGuire; Robert Cook-Deegan
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

9.  Introduction: Sharing Data in a Medical Information Commons.

Authors:  Robert Cook-Deegan; Mary A Majumder; Amy L McGuire
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

10.  Creating a data resource: what will it take to build a medical information commons?

Authors:  Patricia A Deverka; Mary A Majumder; Angela G Villanueva; Margaret Anderson; Annette C Bakker; Jessica Bardill; Eric Boerwinkle; Tania Bubela; Barbara J Evans; Nanibaa' A Garrison; Richard A Gibbs; Robert Gentleman; David Glazer; Melissa M Goldstein; Hank Greely; Crane Harris; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Salvatore La Rosa; John Mattison; Christopher J O'Donnell; Arti K Rai; Heidi L Rehm; Laura L Rodriguez; Robert Shelton; Tania Simoncelli; Sharon F Terry; Michael S Watson; John Wilbanks; Robert Cook-Deegan; Amy L McGuire
Journal:  Genome Med       Date:  2017-09-22       Impact factor: 11.117
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  2 in total

1.  What is a Medical Information Commons?

Authors:  Juli M Bollinger; Peter D Zuk; Mary A Majumder; Erika Versalovic; Angela G Villanueva; Rebecca L Hsu; Amy L McGuire; Robert Cook-Deegan
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

2.  A FAUSTIAN BARGAIN THAT UNDERMINES RESEARCH PARTICIPANTS' PRIVACY RIGHTS AND RETURN OF RESULTS.

Authors:  Barbara J Evans; Susan M Wolf
Journal:  Fla Law Rev       Date:  2019-09
  2 in total

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