Born sometime in November of 2018, Lulu and Nana (pseudonyms) are twin girls and the first babies to be born after having been subjected to genetic engineering as an embryo. Researcher He Jiankui first released a video describing the successful birth of the twins after his gene surgery November 25th, explaining that the two “came crying into this world as healthy as any other babies.” The girls’ genomes were altered in only one place at the allele that provides HIV with a pathway to infect someone. Grace, the twins’ mother, was impregnated using in-vitro fertilization, commonly known as IVF, but right after her egg was fertilized with her husband Mark’s sperm, a protein was introduced into the single cell zygote to alter the genome. Gene manipulation is not a new technology - however, its controversy especially when it comes to humans has made innovations slower to come. A guide RNA is used to identify the point of mutation, and then tools such as CRISPR/Cas9 use Cas proteins produced naturally in certain types of bacteria to cut DNA in precise locations, at which point a mutation can be introduced.
Mark is HIV positive. He never dreamed that he could have children without a risk of passing on the genetic defect making them prone to the disease. The embryos were carefully monitored during the entire process, their genomes being sequenced in-depth right after the gene therapy and throughout the pregnancy of their mother Grace. The researchers also used ultrasounds and blood tests to keep track of the state of the twins. The hope is that this technology could one day be used to help edit embryos with an eye to preventing even more dangerous diseases, including ones that are encoded directly into a person’s DNA through mutations. This could include cystic fibrosis or Shane’s muscular dystrophy. However, the process of altering the genome of a human is a highly debated subject. Not only does it violate the ethical codes put in place by dozens of countries as a protective measure, but it also poses a threat to future generations as any changes made to a person’s DNA as an embryo can be passed on, through the germline, to any of their children. Moreover, should the technology become advanced and utilized enough, many fear that it could lead to a rise in so-called “designer babies,” in which the wealthy would genetically alter their offspring to have certain, desirable traits. If so, it would only exacerbate class tensions that already exist in our world, as those with enough money could continue to expand the gap by providing their children with advantages literally coded into their very beings. In his video releasing the news about Lulu and Nana, He Jiankui closes by saying that gene surgery “should remain a technology for healing,” and that the altering of the genome with an eye to giving a child certain traits, rather than preventing disease, “should be banned.”
It becomes clear that the controversies of modern research are not as clear cut as they perhaps once were. The ethical considerations of a world that has so much at its disposal are twice as important, and yet the risks and rewards of modern technology are also twofold. Perhaps, as He Jiankui explains, gene surgery will someday become as accepted as IVF. Perhaps it will not and we will find new ways to address diseases coded for in our genes. Either way, it will be up to future generations to shape the way in which the world views gene surgery and how it responds in all realms - whether social, economic, or political - of life.