Roosevelt Institute | Cornell University

Handling a Disaster: Gene-Edited Babies

By Lisa YuPublished February 21, 2019

Cell editing
Reports on the gene-edited babies who were born in November of 2018 were overwhelmingly disapproving of the illegal procedure. What exactly is so controversial, and how can we prevent similar cases in the future?

The news of gene edited babies took the scientific world by storm when the story broke last year. According to the first reports, a scientist by the name of He Jiankui edited the CCR5 gene of twin girls using CRISPR/Cas9. The girls were delivered in China in November of 2018, and what followed was a series of scientific and organizational disasters.

Firstly, it’s essential to understand why the creation of the gene-edited babies was an irresponsible, unethical and illegal act. The CRISPR/Cas9 system is a relatively new tool that has revolutionized gene editing research around the world in just a few years. The application of gene editing to create human beings, however, is explicitly forbidden in most countries around the world, including China and the United States. Most scientists condemn Jiankui’s work on many different fronts. Experiments with gene editing human embryos are still in their early stages and no guarantee on the safety of human germline editing exists. The goal of the experiment was to prevent HIV from transmitting from the father to the children by creating a mutation in the CCR5 gene that confers greater resistance to one type of HIV infection. This goal was misguided, however, as the chance of a father transmitting HIV to a fetus is “almost zero. In fact, probably zero” according to Dr. Fauci of the National Institute of Allergy and Infectious Diseases (NIAID). There are also established, safe methods already in use to help further reduce the risk of HIV transmission, including sperm washing and IVF, so it is clearly unethical to place an unknown risk on these babies through an unnecessary and illegal procedure. Furthermore, it was revealed in Jiankui’s presentation that the babies have acquired different mutations, none of which are the desired mutation, and that only some strands of DNA in some cells have been mutated. The discussion on the ethics and scientific sloppiness of Jinkui’s work is extensive, and while we cannot undo the mistakes that have already been made, we can and should work towards mitigating the harm caused by this study and preventing cases like this from occurring again.

One of the first steps that should be taken is to prevent Jiankui from running any further scientific studies. While he has been fired from his position at the Southern University of Science and Technology in Shenzhen, he has his own funding and company, and has been able to conduct research secretly in the past. He has already announced that there is a potential second pregnancy, also with undetermined edits. This experiment clearly cannot continue.

There is also the question of what will happen to the twin girls, who were products of this unethical and illegal experiment. Without a doubt, they will require monitoring throughout their lives as the effect of these mutations on their health is completely unknown. However, this responsibility should be placed on other scientists, and potentially the Southern University of Science and Technology. The girls will also spend their lives as experimental test subjects, and if they ever choose to have children, their children will likely be studied as well. At the very least, their identities should be kept anonymous to protect their privacy and prevent any possible discrimination.

To prevent cases such as this one from occurring again, there needs to be more potent checks and frequent discourse on ethics in the scientific world. The Chinese government is currently pressing criminal charges against Jiankui, and the investigation is exploring how Jiankui was able to circumvent all the regulations that prohibited his work. The results of this should be used to inform policy on bioethics, and perhaps encourage a greater scrutiny of the work done by private biotechnology companies. Universities should also consider adding a required ethics course to their science and engineering curriculums to create a broader awareness of ethical considerations in technological advancements.

The discussion of the gene-edited babies has mostly been focused on the faults of what has already happened, but now it is time to turn the conversation over to the future. The world does not need immediate answers to the broader implications and ethics of embryonic gene-editing, but it does need a structured way to thoroughly consider ethical impacts of technological advancements and to conduct responsible science as we search for cures.