Jump to ContentJump to Main Navigation
World Wide ResearchReshaping the Sciences and Humanities$
Users without a subscription are not able to see the full content.

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

Show Summary Details
Page of

PRINTED FROM MIT PRESS SCHOLARSHIP ONLINE (www.mitpress.universitypressscholarship.com). (c) Copyright The MIT Press, 2022. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in MITSO for personal use.date: 29 June 2022

8.2 Data Sharing in Genomics—Is It Lawful?

8.2 Data Sharing in Genomics—Is It Lawful?

(p.245) 8.2 Data Sharing in Genomics—Is It Lawful?
World Wide Research

Jane Kaye

The MIT Press

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

MIT Press Scholarship Online requires a subscription or purchase to access the full text of books within the service. Public users can however freely search the site and view the abstracts and keywords for each book and chapter.

Please, subscribe or login to access full text content.

If you think you should have access to this title, please contact your librarian.

To troubleshoot, please check our FAQs, and if you can't find the answer there, please contact us.