Feb 12, 2013
from 11:00 AM to 12:00 PM
|Where||Bondurant Hall G100|
|Contact Name||Kriste Kuczyinski|
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The prospect of genome sequencing in the newborn period raises a number of ethical and social issues for parents, including concerns about the potential psychosocial harms associated with unexpected or ambiguous results, and questions as to whether parents should have access to all of their newborn’s genomic data. In addition, the use of genome sequencing in the context of a state-run public health program raises practical challenges regarding the ability to manage and interpret the large amount of data generated through these testing platforms and then appropriately communicate that information to families. Adequately addressing these challenges will require consideration of perspectives from various stakeholders of a Newborn Screening program regarding interest and concerns about the use of genomic sequencing in newborn screening. This presentation will explore the ethical and practical challenges of integrating genomic sequencing into Newborn Screening and report on findings from a recent study that assessed parents’ interest in whole genome sequencing of newborns as part of a state newborn screening program. The study also compared these findings with parental interest in WGS if it were offered in the context of a pediatrician’s office. Lastly, this study explored what factors might influence parents interest in WGS for a newborn, such as accuracy of the testing or privacy of the results.
The Center for Genomics and Society was established to examine the ethical, legal and social implications (ELSI) unique to large-scale genomic science. Major ELSI questions emerge in association with large-scale studies such as the creation of centralized DNA banks, use of genetic technologies in public health screening, and the rise of gene-based personalized medicine.