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World Wide ResearchReshaping the Sciences and Humanities$
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William H. Dutton and Paul W. Jeffreys

Print publication date: 2010

Print ISBN-13: 9780262014397

Published to MIT Press Scholarship Online: August 2013

DOI: 10.7551/mitpress/9780262014397.001.0001

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8.2 Data Sharing in Genomics—Is It Lawful?

8.2 Data Sharing in Genomics—Is It Lawful?

Chapter:
(p.245) 8.2 Data Sharing in Genomics—Is It Lawful?
Source:
World Wide Research
Author(s):

Jane Kaye

Publisher:
The MIT Press
DOI:10.7551/mitpress/9780262014397.003.0028

Sharing of sequence (genotype) data has contributed to major advances in the field of genomics, as shown by the development of a range of community resources, including the International Human Genome Sequencing Consortium and the International HapMap Project. While such projects aim to make sequence data freely available with unrestricted access to all scientists through the Web, the databases do not contain any demographic, clinical, or other detailed lifestyle (phenotypic) information associated with the sequence information. This chapter highlights ethical issues in e-Research by focusing on the sharing of genomics data as a public resource. It considers the technical and institutional approaches used to protect personal data, including the framework adopted by the European Union's directive on data protection. It also examines the issue of consent for the processing of medical data and data sharing in relation to secondary use.

Keywords:   genomics, data sharing, e-Research, personal data, data protection, European Union, consent, medical data, secondary use

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