Who Owns the Data in a Medical Information Commons?
Abstract
In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons 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.Author Profiles
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Citations of this work
Country Reports.Ma'N. H. Zawati,Don Chalmers,Sueli G. Dallari,Marina de Neiva Borba,Miriam Pinkesz,Yann Joly,Haidan Chen,Mette Hartlev,Liis Leitsalu,Sirpa Soini,Emmanuelle Rial-Sebbag,Nils Hoppe,Tina Garani-Papadatos,Panagiotis Vidalis,Krishna Ravi Srinivas,Gil Siegal,Stefania Negri,Ryoko Hatanaka,Maysa Al-Hussaini,Amal Al-Tabba',Lourdes Motta-Murgía,Laura Estela Torres Moran,Aart Hendriks,Obiajulu Nnamuchi,Rosario Isasi,Dorota Krekora-Zajac,Eman Sadoun,Calvin Ho,Pamela Andanda,Won Bok Lee,Pilar Nicolás,Titti Mattsson,Vladislava Talanova,Alexandre Dosch,Dominique Sprumont,Chien-Te Fan,Tzu-Hsun Hung,Jane Kaye,Andelka Phillips,Heather Gowans,Nisha Shah &James W. Hazel -2019 -Journal of Law, Medicine and Ethics 47 (4):582-704.
What is a Medical Information Commons?Juli M. Bollinger,Peter D. Zuk,Mary A. Majumder,Erika Versalovic,Angela G. Villanueva,Rebecca L. Hsu,Amy L. McGuire &Robert Cook-Deegan -2019 -Journal of Law, Medicine and Ethics 47 (1):41-50.
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Is there a civic duty to support medical AI development by sharing electronic health records?Sebastian Müller -2022 -BMC Medical Ethics 23 (1):1-12.
References found in this work
What is a Medical Information Commons?Juli M. Bollinger,Peter D. Zuk,Mary A. Majumder,Erika Versalovic,Angela G. Villanueva,Rebecca L. Hsu,Amy L. McGuire &Robert Cook-Deegan -2019 -Journal of Law, Medicine and Ethics 47 (1):41-50.
Research on Medical Records without Informed Consent.Franklin G. Miller -2008 -Journal of Law, Medicine and Ethics 36 (3):560-566.
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