Newborn screening is mandatory in most states…However, now that scientists have developed methods for sequencing the entire genome, what would happen if states began incorporating genome sequencing to find out more about baby’s health? What should parents learn about their baby’s genome? What shouldn’t they?
To study these questions, researchers and doctors across the country have formed a consortium called Newborn Sequencing In Genomic medicine and public HealTh, dubbed NSIGHT….
This consortium is working with parents – and conducting genomic sequencing on newborns – to develop evidence that may support guidelines for how this new technology could be effectively and appropriately incorporated into newborn screening or the care of newborns.
“Where is the boundary of parental responsibility to learn important health information about their child versus delving too far into genetic information that could take away from that child’s ability to make decisions for themselves?” said Jonathan Berg, MD, PhD, associate professor of genetics at the UNC School of Medicine…”This is one of the main bioethics questions of our time.”
As genomic technology accelerates and costs decrease, it is easy to imagine a future where newborn babies are empowered with their genetic information from the beginning of their lives.
[Study can be found here.]
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