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(p. 155) Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome Sequencing 

(p. 155) Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome Sequencing
Chapter:
(p. 155) Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome Sequencing
Author(s):

Erin Rothwell

and Jeffrey R. Botkin

DOI:
10.1093/med-psych/9780190647254.003.0009
Page of

date: 06 December 2019

There are a number of ethical issues raised when newborns participate in research. Two examples include genetic testing, and the storage and research use of biospecimens collected from newborns. This chapter highlights a range of ethical, legal, and social implications with these practices. Examples from retention of residual newborn screening bloodspots, use of biospecimens collected from infants in biomedical research, concerns with the use of whole genome sequencing, and challenges of consent during the newborn period are discussed. These issues are explored within the context of newborns who are healthy or newborns faced with an undiagnosed condition. At this time, more research is needed to understand the impact of genomics on newborn health care, the storage and use of data generated from biospecimens, and how genetic results from newborns impact families. Further challenges around consent and parental permission are also discussed.

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