Editing humanity: A double-edged sword

As CRISPR innovation accelerates, the ethics of its development demand attention

Kathryn Winters, Staff Writer

November 18, 2025

After his final treatment, doctors from the Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania (Penn) prep baby KJ Muldoon for discharge. While the success of his treatment has been widely celebrated as a triumph in both science and medicine, it also raises concerns about children’s consent, access, and the need for global ethical guidelines. “New technology is hard for people to accept sometimes. I think that the more people learn about CRISPR and all the benefits it can bring, the more accepted it will become,” said Jaime Abdilla, co-director of the Biotechnology Institute (BTI) and a biotechnology instructor at Carlmont.

Photo courtesy of Children’s Hospital of Philadelphia

Kathryn Winters · Editing humanity: A double-edged sword

Two-day-old baby KJ Muldoon only had a few months left to live.

Diagnosed with a rare and fatal genetic disease, his life hung in the balance — the only known treatment offering little hope of survival.

So, doctors created a new one.

But some worry they’re playing God.

KJ’s story

From the moment KJ was born, doctors knew something was wrong. Unlike most newborn infants, he was unusually inactive, refused to eat, and couldn’t regulate his body temperature. In response, doctors at the Children’s Hospital of Philadelphia (CHOP) began testing immediately.

The results were worse than expected. KJ was diagnosed with severe carbamoyl phosphate synthetase 1 (CPS1) deficiency, a urea cycle disorder. Urea cycle disorders are extremely rare and prevent the body from being able to break down ammonia, leading to toxic buildups in the blood that can quickly become fatal.

At the time, KJ’s only potentially life-saving option was to get a liver transplant — not only rare, but also a risky procedure for such a fragile newborn. Even if a donor organ became available, he’d still need to be stable enough to survive the surgery, something doctors worried was unlikely.

“When we Googled CPS1 deficiency, we saw there were two likely outcomes — a liver transplant or death. We were in shock,” said Nicole Muldoon, KJ’s mother, in a CHOP press release.

Little did she know there might be a third outcome. Behind the scenes, scientists at CHOP and the University of Pennsylvania (Penn) had already been researching an experimental alternative: CRISPR, which would soon save its first baby’s life.

New hope: CRISPR

In the world of science, the term “CRISPR” holds a lot of weight. Yet, to the majority of society, it remains a mostly unknown or forgotten arrangement of letters.

“I feel like whenever I say ‘CRISPR’ around people, I kind of wait a second and see if they nod or if they’re like, ‘What’s that?’” said Phoebe Hall, a Ph.D. student at the University of California, Santa Barbara, who is doing CRISPR research.

Standing for Clustered Regularly Interspaced Short Palindromic Repeats, CRISPR, specifically the system using the Cas9 protein (CRISPR-Cas9), is a genome editing technology known for its precision and speed. It was co-developed by Jennifer Doudna and Emmanuelle Charpentier in 2012, discoveries that were awarded the Nobel Prize in Chemistry in 2020, during which it was described as “genetic scissors rewriting the code of life.”

Why Cas9?

CRISPR often gets the spotlight, but it’s actually just the name of the overall system. The real work is done by Cas9, the protein responsible for making the precise cut in the DNA.

But Cas9 isn’t the only option. In fact, according to the National Library of Medicine, there are at least 287 identified Cas proteins.

“There are a variety of Cas proteins, and people use different ones for different situations. For example, there are some that are smaller than Cas9, so that can be good if you need your gene editing machinery to get into a smaller place,” said Phoebe Hall, a PhD student at the University of California, Santa Barbara, who is doing CRISPR research. “But Cas9 is the easiest one to deal with.”

However, its popularity isn’t necessarily because it’s the best or most effective; it’s because it was the first. Cas9’s early discovery gave it a significant head start in research, tool development, and community adoption.

“It's kind of a generalist and a place to start because it was the first one described and used for this. There are more papers about it, and there are more people who've used it before,” Hall said. “People are starting to try to work on other Cas proteins, but that work is not as established yet.”

“CRISPR is a fast, precise, and relatively inexpensive technology to edit our DNA sequence that can have real, life-changing outcomes in a very short period of time,” said Jaime Abdilla, co-director of the Biotechnology Institute (BTI) and a biotechnology instructor at Carlmont.

However, contrary to popular assumption from its recent attention, CRISPR itself isn’t a new, or even fully human-developed, system. In 1987, Yoshizumi Ishino accidentally identified it for the first time in the bacterium, E. coli, and it has existed in many microorganisms for billions of years.

“I think people have a general understanding, and it’s probably a misunderstanding, but in some ways that’s okay,” Hall said. “If you were to tell them that it’s a way to change DNA, I think that is a basic explanation that works, but I think it’s also interesting to explain that it’s a naturally occurring system that humans just figured out how to use for our purposes.”

In fact, CRISPR is present in nearly all archaea, microorganisms once considered bacteria but now noted for their evolutionary differences and approximately half of all known bacterial species. It’s their natural, adaptive immune system against their own viruses, called phages.

After surviving a viral infection, small pieces of the phage’s DNA “spacers” are stored within the bacterium’s own genome, creating a CRISPR array — a genetic record of past infections. In a way, it vaccinates itself, as a future infection of the same phage will trigger a genetic “memory” of how to destroy it. This “memory,” otherwise known as the now stored viral DNA, can be used by the bacterium to create a guide RNA — a temporary copy of part of the viral DNA — that a cutting enzyme, such as the Cas9 protein, can compare and then identify the virus with to find exactly where to cut it out, killing every instance of it and saving the bacteria.

Scientists make use of bacteria and archaea’s CRISPR system by creating their own custom guide RNAs matching the gene they want to edit, so Cas9 will cut it out to be replaced with whatever gene they want. This process is extremely cost-effective.

“A lot of people think that we invented it, but Cas9 and other Cas proteins exist naturally as bacterial defenses against viruses, so it’s just humans reprogramming those to do what we want them to do,” Hall said.

The past decade following Doudna’s research has been full of many revolutionary advances and discoveries relating to CRISPR, most notably one made in late February 2025 with KJ. For the first time, a personalized CRISPR gene editing therapy was used to successfully treat a child of his genetic disease.

“It’s one of those things where each individual development doesn’t feel that crazy, but then if you were to jump 10 years in time, who knows what that looks like,” Hall said.

Addressing concerns: Transitioning from the lab to the real world

CRISPR in the food industry

When people think of gene editing, they often imagine designer babies or miracle cures. However, CRISPR has also begun to play an integral role in agriculture.

“They have used CRISPR to eliminate the ‘browning gene’ in mushrooms. Many consumers will not buy less-than-perfect produce, even though it is good,” said Jaime Abdilla, co-director of the Biotechnology Institute (BTI) and a biotechnology instructor at Carlmont. “While this may seem like a strange use of CRISPR, it could save millions of pounds of food waste, make prices lower for food, and would be better for the environment, since resources such as water and fertilizer are saved because there is less crop loss.”

Phoebe Hall, a PhD student at the University of California, Santa Barbara, is currently researching how CRISPR might be used on a bioluminescent crustacean. Before graduate school, however, she worked at a startup using CRISPR in a very different way — to make better cheese.

“I wasn't really a CRISPR fan or a person who used CRISPR regularly until I started my job at a vegan cheese startup, after graduating,” Hall said. “I was drawn to the alternative protein industry because of its potential to improve our food system, both in animal welfare and sustainability.”

Hall quickly realized how essential CRISPR was to achieving those goals.

“CRISPR is a very important tool for enabling all of the alternative protein work, such as vegan cheese and lab-grown meat,” Hall said. “Most of the companies or groups working on alternative proteins need to be doing gene editing somehow because they're making something that's completely new — that doesn't exist in the world exactly the way they're trying to make it.”

Still, the idea of gene-edited food often makes consumers uneasy. For many, hearing that any gene modifications were involved in the process at all can be enough to turn them away entirely.

“I definitely think that it's going to be a huge issue with the marketing. A lot of this stuff isn't fully out in the world for sale yet, so we don't know exactly how they're going to go about marketing it, and exactly what people's responses will be, but based on preliminary surveys and general attitudes, people will definitely be alarmed in some ways,” Hall said.

According to Hall, one of the most common misconceptions causing concern is that the final food product will contain edited DNA, also known as genetically modified organisms (GMOs). She assures that it isn’t true.

“The thing to note is that the cheese doesn’t have edited DNA in it because you're editing the microbes to make the dairy protein, so by the time you purify it out, there are no GMOs in the product because all the microbes get left behind when you purify it out. We have to do a lot of quality control to show that we're getting all the microbes out when we do the purification,” Hall said. “That being said, the average consumer is not going to understand that, so when they hear lab-grown food, that is going to be alarming.”
Using CRISPR to treat genetic diseases

Since its initial development, CRISPR has always carried a bold ambition: to treat humans.

In the medical world, some of the most urgent and daunting challenges are diseases and conditions that have long resisted any reliable cure — cancer, Alzheimer’s disease, Parkinson’s disease, and diabetes are just a few. Now, human gene editing is giving scientists a new path forward. With the ability to edit DNA finally a reality, many are beginning to wonder if these diseases could be eliminated at the source, preventing any pain or treatments altogether.

One such case is sickle cell disease, which has become a major focus in the push to make CRISPR a practical medical tool.

Sickle cell disease is an inherited disorder affecting hemoglobin, the protein in red blood cells responsible for transporting oxygen throughout the body. Normally, these red blood cells are flexible discs that can easily move through blood vessels. However, the sickle cell mutation produces abnormal hemoglobin, which causes these cells to become stiff and curved, taking on the characteristic “sickle” shape. These misshapen cells struggle to move through the bloodstream and can clump together, blocking blood flow entirely and leading to severe complications.

Before CRISPR, the only available treatments for this disorder were bone marrow transplants and blood transfusions, both dependent on finding a matching donor, which can be difficult. Not only that, but donor treatments also carry the risk of graft-versus-host disease, which is when the received cells see the recipient as foreign and attack them, an often fatal internal battle.

“Especially with sickle cell disease and other diseases, where blood transfusions are a really popular treatment but are really hard to obtain because you need donors with matching tissue and blood types, CRISPR would be a great tool to use and edit those genes instead, because you don't need donors,” said junior Arina Bolsakova, a Carlmont BTI student currently researching how sickle cell disease can be cured with CRISPR.

While CRISPR offers immense promise, it also brings many concerns, the most commonly cited being off-target effects, where gene editing unintentionally alters parts of the genome beyond the intended target.

Still, Hall says these risks can be almost fully mitigated with the introduction of better tools and careful design.

“When you're doing a CRISPR experiment from start to finish, you design your guide RNA, and there are online tools that help you find out if the sequence that you're trying to use is going to potentially be a match with anywhere else in the genome,” Hall said. “So, if you do a bad job designing your guide sequence, or if you don't double and triple-check it against the genome and against these various guide RNA design tools, then off-target effects are a lot more likely. But if you design your guide RNA very specifically, then there should only be one place in the genome that matches. So, I think that off-target effects are becoming less of a concern.”

Hall also notes that much of the current disease treatment work is well-suited to reduce these risks because of how targeted the process is, often occurring outside of the body.

“With sickle cell disease, they take out bone marrow cells that are responsible for making red blood cells, edit those, and then put them back in the person's body. So, the effects should be localized to only the bone marrow cells,” Hall said. “A lot of the CRISPR therapies that we're thinking about right now are not editing every cell in a person's body, but just editing cells that are relevant to the disease or the problem that we're trying to combat.”

Drawing new lines: Ethical debates

Despite its immense potential, editing human DNA, especially at the earliest stages of life, introduces a host of ethical and practical concerns. The same tools that could cure devastating diseases could also be misused to alter traits or make irreversible decisions on someone else’s behalf. Additionally, even with careful design, there is still the risk of off-target effects, some of which could be fatal or even more compromising than the original condition.

Yet, this debate all boils down to a deceptively simple question: should CRISPR ever be done?

“There are going to be more debates and bridges to cross about where you draw the line of what is a medical condition versus a cosmetic thing. But, in general, I’m pro-CRISPR therapies for humans that can help with genetic diseases and conditions,” Hall said.

Still, where that line gets drawn and who gets to draw it remains controversial.

“Ethical use of biotechnology has always been a hot topic,” Abdilla said. “While we can use biotechnology to create designer babies, I feel that we should be focusing on this technology to better humankind in general: allowing people to live without chronic or congenital disease, live without cancer, and have access to food and a clean environment.”

History has shown what can happen when scientific boundaries aren’t clearly defined, and CRISPR is used without limits.

Unbeknownst to many, before KJ, there were two others. In 2019, at the Second International Summit on Human Genome Editing, Chinese scientist Jiankui He announced he had created the world’s first genetically edited babies using CRISPR. Unlike KJ, however, who received treatment after birth, He edited embryos before conception, which is suspected to have caused off-target mutations in the twins later born.

His shocking and abrupt violation of the global ethical consensus has exposed a troubling lack of basic medical ethics and regulatory enforcement.

“People are being pretty careful, or, when people do something that isn’t the best, there are repercussions for them, like the person who did the illegal editing in China was arrested. But globally, some general guidelines should start to be put in place,” Hall said.

To avoid conflict, Hall suggests that these laws be a joint effort between scientists and the public.

“Scientists who work on CRISPR or have an understanding of how it works should be deciding these guidelines, but, at the same time, I wouldn’t want it to be a situation where decisions about guidelines are going completely over the general population’s head,” Hall said. “There’s always the problem of the scientific community being able to communicate what they’re up to to the general public, and when they fail at that, there becomes distrust of science and the scientific community, and I think that it would be dangerous for this to fall into that category.”

As CRISPR continues advancing rapidly, some scientists wonder whether society’s discomfort with gene editing will prove temporary. Many compare it with the early ethical concerns surrounding organ transplants, which once sparked outrage but are now widely accepted.

Yet, Hall sees the future of the technology depending largely on what its purpose becomes — on where the ethical line is ultimately drawn.

“If we really do just stay in the lane of medical therapeutics with CRISPR, like it is with organ donations, I think that it could follow a similar trajectory,” Hall said. “But if it ends up going over into cosmetics and designer babies, I don’t think that’s a good use of CRISPR, and I think that many people would agree, so then I don’t think that acceptance would follow organ donations.”

Beyond the ethics of what can and should be done, there is also the issue of who can access the technology, raising subsequent questions of fairness. If CRISPR remains costly, its life-saving treatments risk becoming breakthroughs only available to the wealthy, further deepening already existing healthcare inequalities.

Still, Hall remains optimistic that this disparity will narrow over time.

“So many people are working on it, and I feel like, when so many people are working on something, it gets more streamlined, more efficient, and more affordable,” Hall said.

But access isn’t the only other challenge.

While CRISPR draws a blurry line between what’s right and necessary, and what could be considered an overreach of science and resources, that line becomes even harder to define when the people most affected aren’t able to make the decision themselves, such as in the case of KJ.

His story has been hailed as a triumph of science and hope, met with much enthusiasm, but it also highlights one of medicine’s most profound dilemmas: the inability of patients, especially children, to provide informed consent.

“I have a friend who’s a medical student and was doing her pediatrics rotation and was saying how struck she was by how much you have to defer to the parents,” Hall said. “She said there would be situations where she could see that there was a clear answer to what they should do, but if the parents didn’t want it, they couldn’t do it.”

As a parent herself, Abdilla understands the weight of that responsibility.

“In addition to being a scientist, I am also a mom. Part of being a parent is making decisions for your child that could impact them for the rest of their lives. I cannot speak for other parents in the decision-making process for their children, but for me, it is very simple: I will do anything under the sun to make sure that my boys are healthy and have the best chance of living a long life free of pain, struggles, and suffering,” Abdilla said. “If my kids were as sick as KJ, if there was any hope that I could make them healthier and have a better future, I would make the same decision KJ’s parents made.”

About the Contributor

Kathryn Winters, Staff Writer

Kathryn Winters (class of 2027) is a junior at Carlmont High School. She is both a Highlander Editor and a Staff Writer for Scot Scoop. When not chasing down leads for her news ledes, she’s deep in research for future stories. And when she’s not doing that, you’ll probably find her out on the golf course playing for Carlmont’s varsity team or training at the karate dojo, ideally ending the day binging Modern Family with her family. View her portfolio here!

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Editing humanity: A double-edged sword

KJ’s story

New hope: CRISPR

Drawing new lines: Ethical debates

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