Blog note: As in the days of Noah. All flesh was corrupted. Only Noah was perfect in his generation (not genetic corruption). End of note.
Congrats on the new baby. Want to screen your baby’s DNA? Part Five in a Series.
By Susan Scutti, CNN. Updated 9:23 AM ET, Sun January 6, 2019
Would parents treat their kids differently due to genetic test results?
“We don’t know what the data means, we just think we do — and we may not be very good at dealing with the information,” Tien wrote. “Will I, as a parent, treat my kid differently than I otherwise would have because I believe from newborn sequencing that he or she has an above-average chance of developing a type of mental illness?”
It seems right to consider the “best interests of the child,” Tien wrote, “but parents have their own interests (and may not even agree with each other), and that assumes both parents are involved in the decision.” He also questioned, along with Lunshof and Powell, whether the newborn genome sequence data could be kept private and secure.
This is the focus of Lantos’ NIH study, which looked at whether newborn genomic sequencing for babies in the NICU (neonatal intensive care unit) could be turned around quickly enough to affect their medical care, he explained. In at least a few cases, doctors thought it made a difference.
Unexpectedly to Lantos, rather than providing information that guided treatment for a child’s recovery, the sequencing results more frequently led to discussions with parents about withdrawing life support, he said: Newborn sequencing “confirmed a bleak diagnosis” and so prevented pain and a prolonged dying process.
Beggs said, “I don’t advocate for sequencing kids now,” at least not while scientists are still learning to predict the consequences of what they find when peering into the mysteries of an individual’s genetic code. He described the families who enrolled in his study as “early adopters” willing to take on the risk of living with uncertainty to help advance science.
Beggs believes that over time “the level of uncertainty is going to go down” and newborn sequencing will become a “standard of care.” Another possibility, though, is that unless there’s a medical reason, sequencing will be deferred until a child reaches age 18 and parents might be sequenced instead; in the coming years, this might occur during pregnancy or as a routine part of their own health care, he said.
“If you sequence both the parents, then you know most of what you need to know about the baby — not everything because all of us carry a small handful of new mutations that occurred during our own fetal development,” said Beggs. “But by and large if the parents have been sequenced there will be much less urgency for sequencing the child.”
The newborn period is a very stressful time for parents, so it’s not really the best time to undergo this process, said Beggs. And by waiting until children are legal adults, you preserve their autonomy.
“Part of what we’re learning is how much more complicated it is than what we thought 10 years ago,” Lantos said. “It’s like exploring a new continent.”
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