Retention and use of human biological samples
Retention and use of human biological samples
the Guthrie card example
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
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