In December 2018, a Chinese researcher, He Jiankui, shocked the world when he revealed the birth of the world’s first genetically edited babies. While it is clear that Jiankui egregiously violated university regulations and ethical standards, his announcement has since ignited a heated international dialogue about the permissibility of human embryonic gene editing. Currently, there are scientists in the United States working in university laboratories, experimenting with genetic editing of human embryos. While implantation of these edited embryos is strictly forbidden per FDA regulations, scientists and the public have increasingly begun to question the implications of this research.
There are a few important points in this debate. First of all, it is key to realize that most scientists are not opposed to editing somatic cells for gene therapy. Somatic cells, such as heart cells or kidney cells, are cells where the genetic changes remain confined to that individual. However, germ cells and embryos are different. Genetic changes to these can be passed down to many future generations, allowing scientists to direct evolution. Harmful genetic defects could be ‘edited-out’ of families and, eventually, human populations. However, this editing could come with unintended consequences or side effects, for individuals and for populations. For instance, if a gene that controls HIV entry into cells is edited, this might confer resistance to HIV infection. However, it might also lead to increased susceptibility to other infections, or over time, might result in evolution of HIV virus to a more virulent strain, which uses other mechanisms of entry.
Certain genetic defects that cause severe diseases could be cured with embryonic gene editing. For instance, Columbia University professor Dieter Egli is currently working on trying to edit embryos to fix the genetic defects that cause retinitis pigmentosa (RP), an inherited form of blindness. There is little argument in the medical community that the treatment of RP represents a great unmet health need. However, several scientists and bioethicists say that once scientists such as Egli publish the recipe for editing embryos for diseases such as RP, there’d be no stopping others from using these technologies to edit embryos for malicious purposes. They are concerned that while standards in countries in the US might be strict to prevent misuse, there could be no stopping such technologies from becoming commonplace in other countries that lack regulatory infrastructure. These scientists demand a moratorium on gene editing research. Others say that a ban is not the answer and that the US should set an example for how to conduct gene-editing research responsibly.
When would embryonic gene editing be permissible? Should a moratorium on this type of research be imposed until stricter standards are established? Or should scientists like Egli be encouraged to continue their work, which might provide life-saving treatments for severe genetic diseases?
Managing Correspondent: Radhika Agarwal
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