If I told you that you could design your baby, would you?
When CRISPR, the gene editing technique, was invented in 2014 the idea of personalizing human genes transformed from fantasy to reality. The possible benefits were endless; humans could become stronger, smarter, immune to numerous diseases, and even biologically happier. On the other hand, the safety was questionable, the ethics were controversial, and the consequences were irreversible.
Human genetic engineering is the direct manipulation of the genome through molecular engineering. The language of cells consists of DNA molecules, which are a string of nitrogenous bases that act like a cellular alphabet. By editing the pattern of these bases, scientists can change the functions of genes and produce new or different traits. Germline engineering involves editing the genes in eggs, sperm, or young embryos. Because the human body develops from a zygote (fertilized egg), which divides into millions of cells, germline engineering can make changes to DNA that will then be passed onto one’s offspring. This could inject new traits into the human population.
This was exactly what Chinese scientist He Jiankui did in 2018 when he modified the embryos of twin girls Lulu and Nana to be immune to HIV and created the world’s first genetically edited babies. Not only was Jiankui’s experiment conducted in secret, but he had also gained consent from the babies’ parents by misleadingly presenting the experiment as similar to a HIV vaccine. This created an international uproar, which illustrated all the different global viewpoints and concerns regarding human germline engineering
Immediately following Jiankui’s announcement of his experiment, 122 Chinese scientists issued a joint statement that Jiankui’s work was “A huge blow to the global reputation and development of Chinese science” [1]. However, Jiankui claimed that he had personal experience with HIV and felt that his work was justified; “I feel proud,” Jiankui stated in an interview regarding the births [2].
To edit the embryos, Jiankui used the CRISPR gene editing technique. This involved using an enzyme to locate and cut specific strands of DNA, inserting the desired genes, and allowing the cell to reconnect the DNA through its own healing mechanism. Despite being the most accurate gene editing technique that exists, CRISPR is difficult to use, and in most cases only some cells are edited. These mosaic embryos that contain normal and abnormal cells may result in a successful change in phenotype, but they also put babies at risk of random mutations. The future consequences of this could be “Sick babies, disabled babies, [and] dead babies,” as stated by Hank Greely, the director of the Center for Law and the Biosciences at Stanford University [3].
Although the parents were warned about the possible consequences, they disregarded these problems and implanted the embryos. Their lack of concern enraged many; David Liu from Harvard University expressed that it was “abhorrent” to expect parents with little to no scientific knowledge to make this decision without assistance [2]. The twins’ parents did not receive explanations about the procedure and were also falsely informed that this experiment was similar to a “HIV vaccine.” This meant that there was no actual informed consent as they did not understand the true implications of the experiment. Furthermore, informed consent can never be fully achieved with germline engineering as the embryo cannot give consent. Parents have the right to make decisions for their children, but not change their identity.
Another concern highlighted by Jiankui’s experiment was that regulations vary from country to country. For example, Chinese regulations are significantly less strict than America’s, which are in turn less strict than the regulations in Canada. This could result in loopholes and blackmarkets.
Genetic editing is also very expensive. It could increase the disparities in access to health care and create social classes based on the quality of people’s edited genes. Therefore, genetic engineering is not only biologically impactful but also economically and socially influential. When people have natural differences in the genes coding for skin color, prejudice and racial bias has been incredibly severe. Imagine what would occur when some people’s genes are purposefully enhanced.
Currently, there is no international legislation on human germline engineering, despite the consensus that it is a dangerous and revolutionary area of research. Human germline editing is banned in most of Western Europe, Canada, Mexico, Brazil, South Korea, Australia, and New Zealand. Furthermore, although the United States, China, India, Japan and Ireland have guidelines, most countries have ambiguous or no guidelines at all [4]. Thus, the creation of stronger international regulations is critical. The regulations created now can be especially monumental as they will shape how this technology develops in the future.
Numerous scientists advocate the 14-day rule, which mandates that in-vitro human embryos are not allowed to develop past the equivalent of 14 days in embryo development. 14 days is the limit because it is the last stage twinning can occur, which represents individualization. The founding cells of the nervous system cannot yet be identified, and the embryo cannot further develop unless implanted [5]. Only 12 countries have laws that enforce the 14-day rule, and only 5 countries have regulations encouraging the 14-day rule.
Everything has a structure or a blueprint for their development. Kids mature into adults with longer arms and bigger feet, but they still have the same basic structure. Even inanimate objects like cars may look different to Ford’s original model, but the structure is replicable with wheels, seats, chassis, and engine. This shows just how important the fundamental structure we are creating now will be in the future. With this in mind, the concept of gene engineering should be cultivated into a tool that can safely and ethically enhance the lives of human beings.
[1] Jing-Ru Li et al., “Experiments That Led to the First Gene-Edited Babies: The Ethical Failings and the Urgent Need for Better Governance,” Journal of Zhejiang University, January 2019, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331330/.
[2] Sharon Begley, “Amid Uproar, Chinese Scientist Defends Creating Gene-Edited Babies,” Statnews, November 28, 2018, https://www.statnews.com/2018/11/28/chinese-scientist-defends-creating-gene-edited-babies.
[3] Christina Farr, “‘Experiments to Gene-Edit Babies Are 'Criminally Reckless,' Says Stanford Bio-Ethicist," CNBC, https://www.cnbc.com/2018/11/26/chinese-crispr-baby-gene-editing-criminally-reckless-bio-ethicist.html.
[4] Insoo Hyun, Amy Wilkerson, Josephine Johnston, "Embryology Policy: Revisit the 14-day rule," Nature, May 4, 2016, https;//doi.org/10.1038/533169a.
[5] Martin F. Pera, “Human Embryo Research and the 14-day Rule,” The Company of Biologists, May 30, 2017, https://doi.org/10.1242/dev.151191.