Gene Editing: Making The Perfect Baby
By Jiyoung Lee, English Columnist
Super-humans or products of clinical recklessness?
In Shenzhen, the first genetically edited babies were born last November. A researcher named He Jiankui claims to have made the twins HIV and AIDS immune by removing their CCR5 genes using CRISPR without causing harm to other areas. He reports them as healthy, and that he has other pregnant women involved in his clinical trial who are due soon. His tests were done in private, without knowledge or approval from the institution he was funded from, and the professionals he consulted were substantially inexperienced with conducting clinical trials. This has raised international anger and was publicly criticized at the second Human Genome Editing Summit. The committee, which includes the developer of CRISPR Jennifer Doudna, claimed this was “deeply disturbing,” and that the “possibility of damaging off-target effects has not been satisfactorily explored.” His irresponsibility and failure to conform to ethical norms by going forward with an unauthorized and flawed human trial has alarmed and disgusted many scientists globally.
He Jiankui claims that he knew that the gene editing process was incomplete when he inserted them into the woman’s womb, and that he had intentionally left half the gene to compare its results to the twin who had complete removal. However, the truth is that one of the twins is a complicated and disordered mix of CCR5 gene changes, indicating the portion left was unintentionally created. The bigger concern is that the CCR5 isn’t only linked to HIV/AIDS, but is related to other immune responses such our reaction to the flu, and that removing or altering it could increase risk of mortality from it. There was clearly no medical necessity or emergency in conducting this trial, and its repercussions were not fully looked into. Jiankui He claims the women were fully aware of the implications in participating, but it is unclear if they knew of its risks and that the team was unfamiliar with human trials. The consent forms were named “AIDS Vaccine Development,” even though clearly, altering genetic components is not a form of vaccination.
It’s undoubtedly a very poorly managed clinical trial, and it’s alarming how upfront and confident he can be about the incompleteness of his research and editing process. His intentions seem to me as purely for experimental and testing purposes rather than for succeeding in prevention and finding a cure. Genome editing is treated as a sensitive topic, which is why there are vague guidelines and protocols placed globally. Although everyone recognizes the ethical and safety concerns, its potential in eradicating genetic problems are appealing to us. Countries don’t want to fall behind in solving what seems like the solution to eliminating disorders and imperfections, so none are willing to set clear cut boundaries that prevents and regulates private embryo research. New ways to overlook both private and government funded research must be placed to ensure that every research being done at the embryo level is transparent, with human trials being carried out with global approval. Human gene editing is too sensitive of a topic to be used for political or economic gain and requires international cooperation and public clarity. Instead of under regulating and turning a blind eye on ongoing privatized research, cautionary measures by setting out consequences for moving forward with risky and imperfect tests are necessary to prevent unforeseen outcomes.
Restrictions with Holes
With the introduction of CRISPR, genetically modified somatic stem cells were made possible and researched worldwide. However, further advancement of its uses on human germline cells have been on hold by the US in consideration of public discontent and the technology’s uncertainty. Due to ethical debate and safety concerns, federal money is prohibited from being used to fund research on human embryos, and laws restrict gene editing that can be passed to future generations. In most jurisdictions, human embryo cultures are restricted from developing for more than 14 days, completely limiting the risk of forming a new creation, but in effect limiting advancement in embryonic research. Even with its set limitations, people are concerned about the number of embryos being used by scientists and how these researchers are obtaining them.
Privately funded research, however, has always been ongoing unseen from public eye. Dieter Egli from Columbia University came forward last week that he’d been experimenting with CRISPR to fix retinitis pigmentosa, a form of color blindness in mutated sperm cells, by editing nucleotides in embryos. Many describe this as inhumane and bending the legal bounds, but his argument is that we can’t simply let go of an opportunity to eradicate hereditary diseases that have been ongoing for centuries. He hasn’t conducted any patient trials yet, and cautions that he knows more than to simply inject the gene and expect it to work perfectly.
Potential Exploitation and Misuse
Ironically, CRISPR DIY kits can be purchased by just about anyone for about a few hundred dollars. Essentially anyone who is knowledgeable and interested about genomics would be able to experiment with it freely. Although it’s targeted for young scientists to become interested and educated in genomic research, it does have the potential of being exploited.
It may seem improbable that gene editing could develop to alter physical human attributes since modern practices are focused on therapeutic purposes. However, considering the pace of its development and popularity worldwide, the unnerving idea of a designer baby being created by gene editing worries the public. Some even worry of its capability to magnify the wealth disparity, where we’d live in a world where the rich who can afford genetic altering and prevention from professionals are “superior” to those who can’t and suffer disorders and illnesses. People claim that the risk isn’t entirely just safety concerns, but it’s the people that could go rogue with this new biotechnology by mass engineering humans, creating a recipe to the “ideal human being.” Although this might seem like an overreaction to the current research on preventing genetic disorders, the optimism of its unending capabilities would surely catalyze its advancement without adequate restrictions.
Those that argue there is no pressing need to be experimenting with embryonic research are viewed as selfish in the eyes of parents who are desperate to prevent an inheritable disease from being passed to their kids. In my perspective though, it is too risky to jeopardize two human lives for the potential of a treatment, at least with current day’s technology and intellect. We have yet to confirm of any infallible ways to get into a pregnant woman’s fetus, and there is simply too much risk of other health defects that may be tied to altering a single gene. Although this revolutionary practice could potentially make our kids immune to all disorders and pathogens, I think we are asking for too much control over evolution’s discourse. Ethical questions of modifying nature’s ways question if humans are seeking too much power, trying to act as gods.
Sources
https://issues.org/the-legal-and-regulatory-context-for-human-gene-editing/
https://www.americanscientist.org/article/the-gene-editing-conversation
https://www.apnews.com/4997bb7aa36c45449b488e19ac83e86d
http://pediatrics.aappublications.org/content/108/3/813
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