Jump to ContentJump to Main Navigation
Ethical and Legal Debates In Irish HealthcareConfronting complexities$
Users without a subscription are not able to see the full content.

Mary Donnelly and Claire Murray

Print publication date: 2016

Print ISBN-13: 9780719099465

Published to Manchester Scholarship Online: May 2016

DOI: 10.7228/manchester/9780719099465.001.0001

Show Summary Details
Page of

PRINTED FROM MANCHESTER SCHOLARSHIP ONLINE (www.manchester.universitypressscholarship.com). (c) Copyright Manchester University Press, 2022. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in MSO for personal use.date: 28 June 2022

Retention and use of human biological samples

Retention and use of human biological samples

the Guthrie card example

(p.135) 9 Retention and use of human biological samples
Ethical and Legal Debates In Irish Healthcare

Deirdre Madden

Manchester University Press

The chapter considers the ownership of newborn screening cards (also known as Guthrie cards) and the blood spots retained on them, the role of consent to the use of these cards and relevant data protection provisions which have resulted in challenges to their retention. The issues raised here also have relevance for biobanks and other existing archives of retained biological samples in hospitals and research facilities as similar questions arise in relation to those collections. The chapter recommends that legislation be introduced to exempt the newborn screening card collection from data protection legislation and to put in place a clear and robust governance framework to ensure that individual rights are protected to the greatest extent possible. These recommendations are also relevant to other collections of biological samples in which a strong argument exists for their retention for diagnostic purposes as well as for public health

Keywords:   Newborn screening cards, Data protection legislation, Biobanks, Guthrie cards, Retentained biological samples, Governance framework

Manchester 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.