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B Introduction: Newborn Screening: Storage and Access for Research?

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Chapter Summary

The use of residual newborn blood spots for research poses an interesting array of opportunities and dilemmas. For more than two decades, all dried blood spot samples (DBSS) from the Danish Newborn Screening programme have been stored in a newborn screening biobank at - 20°C. Storage has taken place according to regulations from the Danish Ministry of Health (1993), and recently, new guidelines for the establishment and operation of biobanks in general have been made. This part first discusses the operation of and regulations for biobanks in Denmark and their use in practice and research. It then summarizes the issues, concerns and ideas that emerged during a consultative workshop undertaken as part of the investigation into of the development of policy research related to newborn screening in Canada. Finally, the part presents an accessible summary of issues related to the implementation of population screening.

Keywords: biobanks; Canada; Denmark; dried blood spot samples (DBSS); newborn screening

10.1163/ej.9789004155596.i-329.12
/content/books/10.1163/ej.9789004155596.i-329.12
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