Literature DB >> 28517982

Data Sharing and the Idea of Ownership.

Jonathan Montgomery1.   

Abstract

Ideas about ownership are sometimes used in discussions of data sharing in personalised medicine. Personal health data are thought by many to be 'theirs'. Paradoxically, personalised medicine (at least in the context of genomics) relies on the aggregation of private data into a dataset that is held as a form of knowledge commons. When the notions of private and common property that lie behind this discourse are made explicit we can use thinking about the justifications and jurisprudence of property both to clarify the persuasiveness and limits of such claims, and also how they differ from other principles that are at stake in the interplay between individual and collective goods in the delivery of personalised medicine. This shows that ownership might more plausibly lie with health professionals than patients. In a socialised medicine system, such as the NHS, such professionals are agents of the state and ownership would lie with the commons rather than any individual. Common rather than private ownership of genomic information may be more appropriate.

Entities:  

Keywords:  commons; health data; ownership; personalised medicine; privacy; property

Mesh:

Year:  2017        PMID: 28517982     DOI: 10.1080/20502877.2017.1314893

Source DB:  PubMed          Journal:  New Bioeth        ISSN: 2050-2877


  6 in total

Review 1.  Axes of a revolution: challenges and promises of big data in healthcare.

Authors:  Smadar Shilo; Hagai Rossman; Eran Segal
Journal:  Nat Med       Date:  2020-01-13       Impact factor: 53.440

2.  The 'molecularly unstratified' patient: a focus for moral, psycho-social and societal research.

Authors:  J Hordern; T Maughan; T Feiler; L Morrell; R Horne; R Sullivan
Journal:  Biomed Hub       Date:  2017-11-21

3.  How should we think about clinical data ownership?

Authors:  Angela Ballantyne
Journal:  J Med Ethics       Date:  2020-01-07       Impact factor: 2.903

4.  The Protection for Personal Information Based on IoT Network Management and Data Sharing in Big Data Era.

Authors:  Yu Zhang; Hexiao Yin; Haoyun Dong
Journal:  J Environ Public Health       Date:  2022-10-03

5.  Genomic variant sharing: a position statement.

Authors:  Caroline F Wright; James S Ware; Anneke M Lucassen; Alison Hall; Anna Middleton; Nazneen Rahman; Sian Ellard; Helen V Firth
Journal:  Wellcome Open Res       Date:  2019-02-05

6.  Community-based Health Data Cooperatives Towards Improving the Immigrant Community Health: A Scoping Review to Inform Policy and Practice.

Authors:  T C Turin; I Naeem; Akmn Nurul; M Vaska; S Goopy; R Rashid; A Kassan; F Aghajafari; I Ferrer; A Kazi; I Sadi; M O'Beirne; C Leduc
Journal:  Int J Popul Data Sci       Date:  2020-06-23
  6 in total

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