Is What He Jiankui Did in Genetically Modifying Twins Really So Wrong?
A Chinese researcher, He Jiankui of China’s Southern University of Science and Technology, stunned and outraged the scientific world when he announced that he had genetically edited a pair of twin girls, on his own and without any official permission. He presented an account of his work at a meeting on genome editing in Hong Kong. He said twins Lulu and Nana were both born healthy and that he was proud of what he had accomplished. Another patient of his was already pregnant with a genetically edited embryo, he added. His stated goal was to help people with the human immunodeficiency virus (HIV).
Genome editing, as opposed to genetic engineering or gene therapy, involves permanently changing the DNA in all of a person’s cells. Despite new technology that makes the process more precise and easier to accomplish, scientists are extremely cautious about using it. This is largely due to the risk of unexpected consequences that could affect not only the individual whose genes are altered but his or her descendants as well, for generations to come.
If the claim is proven to be true, it would be the first time a human being had been genetically altered or “edited” using this technology. He’s statement angered and worried other researchers in the field, who criticized him as conducting an experiment on fetuses in a way that was dangerous, irresponsible, and unethical. Almost all countries including China have laws or regulations that either completely ban experiments on humans, or at least make it very difficult to perform the work.
Yet if the babies were born healthy, and free of the HIV what was so wrong about what was done? Among other problems, one of the main issues is that He didn’t address an unmet medical need. In other words, there was absolutely no reason medically to undertake this procedure, placing the fetuses and potentially their future offspring at risk.
He focused his attention on a gene called CCR5, which the HIV virus uses as a doorway for infecting human cells. To prevent the virus from being able to enter the body, several scientists have previously attempted to extract the immune cells of HIV patients, deactivate the CCR5 gene using gene-editing techniques then inject the cells back into the body.
Human genome editing trials to treat HIV have been ongoing since 2009, funded and overseen by NIH. These studies have been conducted in the accepted manner, beginning first with animal studies then moving into humans starting with safety studies. The protocols have been approved through peer review with reports required detailing the status of the experiments including updated information on progress and any adverse effects that may have occurred. Results are not reported until the data has been checked and verified and the conclusions also reviewed by the scientific community. Only then is it considered acceptable to disseminate the finding through the appropriate channels.
It may not be immediately evident what the differences are between the clinical trials overseen by NIH and what He did in genetically engineering the twin girls. Along with his decision to act unilaterally, without oversight, review or approval by members of the scientific and medical communities, the issues of medical necessity are paramount.
The presented fact that the twin girls were born without HIV is entirely irrelevant. While the babies father does have HIV their mother does not. Fertilization occurred in a petri dish which made it impossible for the mother to have contracted the disease from her spouse and at the time of birth she remained HIV negative. The risk of a baby having HIV is only directly related to the HIV status of the mother, not the father. So there is no reason to have ever believed that either child would have been HIV positive regardless of any efforts on He’s part.
This means that He deactivated a perfectly normal gene in an attempt to reduce the risk of a disease that neither child had any risk of expressing as the virus was absent. Furthermore, HIV is a virus that can be prevented through safe sex education and can be controlled such that people can experience a normal life span with antiviral drugs.
But even if you did want to block the CCR5 gene specifically, there are drugs in existence that can do this without the risk inherent in altering the entire genetic makeup of an individual. Many of these drugs have been tested repeatedly in clinical trials.
Other damning facts regarding what He did also exist. For example the deactivation of the CCR5 gene doesn’t always result in immunity to HIV. This is because some strains of the virus infiltrate the body through a different protein. Additionally, while people who have And natural deficiencies in the CCR5 gene appear to be as healthy others, there is also some evidence that they may be more susceptible to West Nile virus, and have an increased risk of dying from influenza.
There was simply no acceptable medical rationale for using a method as extreme and untested as gene editing on these twins. Essentially, He gave Nana and Lulu resistance to the possibility that a disease would be expressed when they were not infected with the virus that caused the disease to begin with. They could have avoided contracting the virus later in life in numerous other ways. Plus, the medical community currently does not have complete knowledge of exactly what every gene may be responsible for and what risks are involved with altering them. Thus, the unnecessary, unwarranted and irresponsible genetic editing that the twins were subjected to could have made them susceptible to numerous other dangers that we can’t even predict at present. Finally, permanently changing their genetic makeup in this way may not only put them in danger but perhaps generations of their future offspring as well. In light of all of these arguments, it is difficult to conclude that He’s actions were anything other than monstrous.