They should call this Project Icarus. WHY ON EARTH would you want to subject the parents and the baby/toddler/child to a future of "well, this could be abnormal....this could go wrong.....you'll have propensity for this...." WHY? While they are at it, why not just SUCK the joy out of living? And stick an IV and have the parents connect it to the stroller.
It wasn't long that people that euthanasia of terminally ill in lot of pain could be a humane thing. It didn't take long AT ALL for Canada to put a 20 year old who had depression. And allowed her to die. So how much more abuse could follow from genetic screening of a newborn.
Maybe they should test the retardation level of the investigators and doctors first.
The 200 conditions included in the Newborn Screens in America (at least California and WA) all fulfill certain criteria. 1) no physical findings at birth. 2) has treatment. 3) early intervention matters for outcome. 4) are seriously damaging if untreated.
Down Syndrome is not on the list. Huntington is not on the list. Many are inborn errors of metabolism that if given the right medical food at a genetics tertiary center, the baby will thrive.
The biggest success story is congenital hypothyroid. Untreated, by 3 months you get an IQ of 20. Treated, you can go to med school or join the military, for a medication that costs pennies a day taken by mouth.
Perhaps we should approach newborn genetic screening with the same standard as we apply to all screening tests: What are the false positives, false negatives, true positives, etc.? What are the all-cause long-term clinically relevant outcomes? Testing for 200 conditions there are nearly countless variables: for instance, the test uncovers a genotype not consistent with the phenotype. As AM alludes, many conditions are not manifest until much later in life, perhaps never. By Bayes theorem, screening a rare condition will likely reveal massive false positives for every true positive. Multiply by 200 and you create a real mess.
Absent really long term data, this is certain to end badly. Modern life is already way too medicalised. Subjectng many/most newborns to a broad spectrum genetic screen is certain to add another group of healthy kids to the burdens of overdiagnosis.
They should call this Project Icarus. WHY ON EARTH would you want to subject the parents and the baby/toddler/child to a future of "well, this could be abnormal....this could go wrong.....you'll have propensity for this...." WHY? While they are at it, why not just SUCK the joy out of living? And stick an IV and have the parents connect it to the stroller.
It wasn't long that people that euthanasia of terminally ill in lot of pain could be a humane thing. It didn't take long AT ALL for Canada to put a 20 year old who had depression. And allowed her to die. So how much more abuse could follow from genetic screening of a newborn.
Maybe they should test the retardation level of the investigators and doctors first.
No mention of the insurance industry implications?
The 200 conditions included in the Newborn Screens in America (at least California and WA) all fulfill certain criteria. 1) no physical findings at birth. 2) has treatment. 3) early intervention matters for outcome. 4) are seriously damaging if untreated.
Down Syndrome is not on the list. Huntington is not on the list. Many are inborn errors of metabolism that if given the right medical food at a genetics tertiary center, the baby will thrive.
The biggest success story is congenital hypothyroid. Untreated, by 3 months you get an IQ of 20. Treated, you can go to med school or join the military, for a medication that costs pennies a day taken by mouth.
Yes, there are a handful of easy-wins in screening and these have certainly been transformative for the outcomes of these select conditions
Perhaps we should approach newborn genetic screening with the same standard as we apply to all screening tests: What are the false positives, false negatives, true positives, etc.? What are the all-cause long-term clinically relevant outcomes? Testing for 200 conditions there are nearly countless variables: for instance, the test uncovers a genotype not consistent with the phenotype. As AM alludes, many conditions are not manifest until much later in life, perhaps never. By Bayes theorem, screening a rare condition will likely reveal massive false positives for every true positive. Multiply by 200 and you create a real mess.
Absent really long term data, this is certain to end badly. Modern life is already way too medicalised. Subjectng many/most newborns to a broad spectrum genetic screen is certain to add another group of healthy kids to the burdens of overdiagnosis.
I’m most concerned what governments could do with the data. It could go any number of directions.
Absolutely, and there have already been some concerning developments in the sale of these types of data including from governments
https://www.bbc.com/news/articles/cpvxgl3n138o
Surely we will be able to treat/prevent Huntingtons someday. But I suppose we ant know when treatment should begin until we have one.