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“A Chinese researcher recently disrupted the CCR5 gene, which builds a protein that acts as an entryway that HIV uses to gain entry to T-cells, allegedly creating the world’s first genetically engineered baby. Chinese officials moved swiftly to condemn the work, and rightly so. Gene-edited babies should probably always be prohibited, not because of fears of creating inequalities and advantaged “super babies,” but because of the reality that editing an embryo is not medically necessary. These modifications occur around conception rather than treating a suffering person—always involving introducing risk, and thus testing the age-old medical admonition of primum non nocere, meaning “first, to do no harm.”
I have argued previously that it is better to enforce national, rather than international, regulation of gene modification tools such as CRISPR-Cas9, since strong regulatory powers such as the FDA exist (swift action by the Chinese supports this claim). In fact, the FDA has so far chosen to regulate CRISPR technology as a drug, rather than a device, which gives it more control over specific applications and uses, while Congress excludes money in its spending bill from being used by the FDA to review applications for editing germ-line or heritable code. Nevertheless, there is no law in the U.S. that outlaws gene-edited babies.
I believe that most modern nations have adequate controls to regulate gene-modified babies, but it is important to explain why there will always be an ambiguous health benefit in creating GMO humans. Consider that disabling the CCR5 gene is not a new idea since U.S. biotech companies are already pursuing a strategy of using a form of gene modification to disrupt this gene to protect T cells from HIV infection. One important difference to this form of prophylactic gene therapy is that when applying it to living human patients a doctor can trade off the risk of the disease versus the tiny risks that gene modification tools could unintentionally alter other genes or damage functional DNA in a patient. In the case of a gene-modified baby, one is only adding the risk of inserting the CRISPR molecules, compared to a hypothetical health status of a person-to-be. The risk calculation is speculative at best.”
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