Who Owns the Data in a Medical Information Commons?

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 ethic...

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Bibliographic Details
Published in:	The Journal of law, medicine & ethics Vol. 47; no. 1; pp. 62 - 69
Main Authors:	McGuire, Amy L., Roberts, Jessica, Aas, Sean, Evans, Barbara J.
Format:	Journal Article
Language:	English
Published:	Los Angeles, CA SAGE Publications 01-03-2019 Cambridge University Press
Subjects:	Databases as Topic - legislation & jurisprudence Databases, Genetic - legislation & jurisprudence Humans Information Dissemination - legislation & jurisprudence Information sharing Interviews Law Learning commons Legitimacy Obama, Barack Ownership - legislation & jurisprudence Ownership - organization & administration Rights Software United States United States
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Summary:	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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1073-1105 1748-720X
DOI:	10.1177/1073110519840485