Originally published November 3, 2017
Here is an excerpt:
The high profile patent battle over the CRISPR-Cas9 gene editing tool, often valued commercially at a billion dollars, and the FDA approval of the first genetically modified medicine for $475,000 — a sale price that is 19 times the cost to manufacture it — have displayed the capacity for turning taxpayer-funded research into an aggressive money-making enterprise. More personally, genetics are being used to typify people for cancer risk and age-related diseases, schizophrenia, autism, and intelligence, none of which truly belong to diagnostic categories.
It is therefore no surprise that parents may want to protect their newborns from becoming targets of commercialization.
In truth, genome sequencing is an extension of earlier commercial sequencing tests and standard newborn screening tests. BabySeq has expanded these to 166 genes, which can theoretically predict thousands of disorders and identify several genetic risk variants. For instance, it has identified a dozen newborns to have a genetic variant associated with biotinidase deficiency, which can impact cognition, and be fixed by taking a simple vitamin. Casie Genetti, a researcher at Boston Children’s Hospital, noted researchers found 109 of 125 babies had at least one, and up to six, genetic variants for an autosomal recessive disorder, meaning that if they went on to have children with a partner who had a corresponding gene compromised in a similar way, it could be damaging or life-threatening for their own baby.
Part of the problem is that we all have some measure of genetic variation, and that can be either dangerous or advantageous depending on the cell type or genetic background or environment.
The article is here.