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Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?

There are clear benefits from genomics and health data sharing in research and in therapy for individuals across societies. At the same time, citizens have different expectations and fears about that data sharing. International legislation in relation with research ethics and practice and, particula...

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Autor principal: Townend, David
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132652/
https://www.ncbi.nlm.nih.gov/pubmed/30120573
http://dx.doi.org/10.1007/s00439-018-1924-x
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author Townend, David
author_facet Townend, David
author_sort Townend, David
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description There are clear benefits from genomics and health data sharing in research and in therapy for individuals across societies. At the same time, citizens have different expectations and fears about that data sharing. International legislation in relation with research ethics and practice and, particularly, data protection create a particular environment that, as is seen in the articles in part two of this special issue, are crying out for harmonisation both at a procedural but at fundamental conceptual levels. The law of data sharing is pulling in different directions. This paper poses the question, ‘harmonisation, an impossible dream?’ and the answer is a qualified ‘no’. The paper reflects on what can be seen in the papers in part two of the special issue. It then identifies three major areas of conceptual uncertainty in the new EU General Data Protection Regulation (not because it has superiority over other jurisdictions, but because it is a recent revision of data protection law that leaves universal conceptual questions unclear). Thereafter, the potential for Artificial Intelligence to meet some of the shortcomings is discussed. The paper ends with a consideration of the conditions under which data sharing harmonisation might be achieved: an understanding of a human rights approach and citizen sensitivities in considering the ‘public interest’; social liberalism as a basis of solidarity; and the profession of ‘researcher’.
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spelling pubmed-61326522018-09-13 Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream? Townend, David Hum Genet Review There are clear benefits from genomics and health data sharing in research and in therapy for individuals across societies. At the same time, citizens have different expectations and fears about that data sharing. International legislation in relation with research ethics and practice and, particularly, data protection create a particular environment that, as is seen in the articles in part two of this special issue, are crying out for harmonisation both at a procedural but at fundamental conceptual levels. The law of data sharing is pulling in different directions. This paper poses the question, ‘harmonisation, an impossible dream?’ and the answer is a qualified ‘no’. The paper reflects on what can be seen in the papers in part two of the special issue. It then identifies three major areas of conceptual uncertainty in the new EU General Data Protection Regulation (not because it has superiority over other jurisdictions, but because it is a recent revision of data protection law that leaves universal conceptual questions unclear). Thereafter, the potential for Artificial Intelligence to meet some of the shortcomings is discussed. The paper ends with a consideration of the conditions under which data sharing harmonisation might be achieved: an understanding of a human rights approach and citizen sensitivities in considering the ‘public interest’; social liberalism as a basis of solidarity; and the profession of ‘researcher’. Springer Berlin Heidelberg 2018-08-17 2018 /pmc/articles/PMC6132652/ /pubmed/30120573 http://dx.doi.org/10.1007/s00439-018-1924-x Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Review
Townend, David
Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title_full Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title_fullStr Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title_full_unstemmed Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title_short Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
title_sort conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132652/
https://www.ncbi.nlm.nih.gov/pubmed/30120573
http://dx.doi.org/10.1007/s00439-018-1924-x
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