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Return of Results from Research Using Newborn Screening Dried Blood Samples

Published online by Cambridge University Press:  01 January 2021

Michelle Huckaby Lewis  and
Aaron J. Goldenberg
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Extract

Whether research results should be returned to participants has been an ongoing debate in the research and bioethics communities for years. The debate has become more complicated as advances in technology permit the discovery through genomic sequencing of a growing number of findings that may or may not have clinical relevance for research participants. As part of the larger conversation regarding whether and under what circumstances research results should be returned to participants, research conducted using residual newborn screening dried blood samples (DBS) deserves special consideration due to the nature of newborn screening, the recent controversy regarding the retention and use of DBS, and the impact of this controversy on state newborn screening programs.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 559 - 568
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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