In this blog post, we’ll explore the potential for advancements in human genetic engineering and the ethical controversies surrounding it from the perspective of the right to be free from suffering.

You, Too, Could Be in Pain

Let’s imagine this scenario. Every morning, I’m unable to move for 10 minutes due to excruciating lower back pain. It takes me 30 minutes after waking up to struggle out of bed, and the excruciating pain doesn’t begin to subside until 1:00 p.m. Of course, sometimes the pain in the bones and muscles—running from my spine to my sacroiliac joints and hips—doesn’t let up all day. It feels as if a long steel rod were driven diagonally through my back and into my thighs. I stop in my tracks whenever this excruciating pain strikes unexpectedly—whether I’m studying at school, crossing a crosswalk, paying the bill at a restaurant, or even right in front of my front door. I jolt awake at night when the pain hits like a bolt of lightning, and while cooking ramen, I’m sometimes unable to move, so I turn off the heat on the pot I just put on the stove and collapse to the floor. I have ankylosing spondylitis, an autoimmune disease with a strong genetic component.
Ankylosing spondylitis is an autoimmune disease in which inflammation in the spinal joints causes pain; repeated inflammation leads to joint stiffness. It primarily affects young adults and requires ongoing medication; in severe cases, biologic agents or surgical treatment may be used. Although the exact cause of the disease remains unknown, it is known to be strongly associated with the HLA-B27 gene. Of course, having the HLA-B27 gene does not necessarily mean that ankylosing spondylitis will develop; it is understood that environmental and immunological factors act in combination. Therefore, a patient’s children may also inherit this genetic predisposition, and their risk of developing the disease may be higher than that of the general population.
Fortunately, my symptoms aren’t particularly severe. I’m currently managing them by taking medication daily and seeing my doctor regularly. Unlike in the early stages of the disease, I’m able to go about my daily life without major discomfort, and my fear of unexplained pain has greatly diminished. However, the thought that I’ll have to continue taking medication and managing this condition for a long time to come is far from reassuring. This feeling is even stronger when I recall the time I suffered without even having received a diagnosis.
But what if this disease were to be passed on to my children? If my son and daughter were to suffer from the same condition as me—curling up in pain every night or shedding tears during a family dinner because of a sudden bout of pain—I would find it unbearable. It’s something I don’t even want to imagine, but this isn’t a matter of an extremely remote possibility, like winning the lottery or being struck by lightning. It is a realistic possibility that we must fully recognize and consider.
This isn’t just my story. Many people today suffer from various illnesses, including autoimmune diseases with unclear causes, and it is known that genetic factors play a role in a significant number of these cases. Our genes are like invisible bombs we carry within us. No one can be certain when or how they will go off. How would you feel if someone threatened you by saying a bomb had been planted, but you couldn’t find it anywhere? This is not a story from some distant land; it is a story that could apply to all of us living today—and to our children as well. These genetic risks are by no means someone else’s problem for anyone living in modern society.

Advances in Genetic Engineering

So, are we forced to accept genetic diseases as an inescapable fate, like death that will eventually come? Not necessarily. Just as we have overcome countless diseases that once threatened humanity, scientists are working to find new solutions. At the heart of this effort are genetic engineering and gene-editing technologies.
In 2015, a Chinese research team garnered significant attention when they published the results of a study in which they edited the genes of human embryos using CRISPR-Cas9 gene scissors.
The aim of the study was to correct the gene responsible for beta-thalassemia. Since then, various studies have followed, and gene-editing technology targeting human embryos has advanced rapidly. However, early research also revealed technical limitations, such as low editing efficiency and the occurrence of unintended genetic mutations.
Genetic engineering refers to the technology of analyzing the functions and roles of genes, and then removing, modifying, or inserting specific genes. Since the development of recombinant DNA technology in the 1970s, genetic engineering has advanced at a rapid pace. Today, genetically modified organisms (GMOs) are utilized not only in the production of pharmaceuticals such as insulin but also in the agricultural sector. However, the safety of genetically modified foods is continuously evaluated by regulatory agencies in various countries, and the consensus among major international organizations and regulatory bodies is that GMO foods currently approved for distribution meet the same safety standards as conventional foods. Nevertheless, discussions regarding consumer perceptions and ecological impacts continue.
So, how far has human gene editing advanced? DNA abnormalities in humans can cause various genetic disorders and some intractable diseases. Therefore, if these abnormalities can be corrected, it could lead to new treatments. In particular, CRISPR gene-editing technology is generating high expectations as it offers significantly greater accuracy and efficiency than existing technologies. Recently, gene-editing therapies targeting certain genetic disorders have been approved and are beginning to be used in actual medical practice, and various clinical trials are also underway. This demonstrates that gene-editing technology is moving beyond the research stage and evolving into an actual therapeutic tool.

Controversy Surrounding Human Genetic Engineering

However, as expectations grow, so does the controversy surrounding the development of genetic engineering technologies applied to humans. In particular, gene-editing research on human embryos remains one of the most significant ethical debates today. Once an embryo’s DNA is altered, that change is passed on to all subsequent cells as they divide; if germ cells are affected, there is a possibility that the change could be passed on to future generations. While this opens up the possibility of preventing or treating genetic disorders such as hemophilia or sickle cell anemia, it also carries the risk that unforeseen errors could create new genetic disorders. Given that the scope of research can extend beyond a single individual to future generations as a whole, social debate continues regarding the limits of scientific and technological intervention.
Furthermore, the fact that the functions and interactions of countless genes have not yet been fully elucidated is another major point of contention. While our understanding of the human genome has deepened significantly compared to the past, research is still ongoing into how individual genes influence one another and contribute to disease and health. Given that even currently used medications cannot perfectly predict all their effects and side effects, fully controlling the human genome—where countless genes interact organically—is inevitably an even more difficult challenge. In particular, since gene editing is often irreversible once applied, thorough verification of the technology’s safety and accuracy must be conducted beforehand.
Ethical issues are also not matters that can be easily resolved. There are diverse opinions regarding the point at which a human embryo should be considered a human life, depending on national, cultural, religious, and philosophical perspectives. Debates continue today over when human life begins and to what extent human intervention in the design of life is permissible, and as genetic engineering advances, the importance of these discussions grows even greater.

I Don’t Want to Be Sick

Even as I consider these debates, my own view is extremely simple and personal. I don’t want to be sick. Being sick is painful and makes many aspects of life miserable. It is not just my problem; it also affects my family and those around me. Illness does not end with an individual’s suffering; it leaves a burden and sorrow in the lives of those who live alongside them.
That is why I fundamentally support the advancement of genetic engineering research and therapeutic technologies involving human subjects. I don’t know if I’m qualified to endorse all research, but I believe that everyone has the right not to suffer needlessly. Not only I, but my children and future generations should also be able to enjoy that right.
Of course, this does not mean that someone else should suffer as a result. From a technical standpoint, genetic engineering must, above all, be developed through careful and thorough verification. As we’ve seen, inappropriate gene editing can affect not only an individual but also future generations, and if serious problems are discovered after the technology is widely adopted in actual medical practice, the consequences could have a major impact on all of humanity. That is why safety and ethical scrutiny are even more important than the pace of technological advancement.
However, there are still diverse views on whether embryos—before the brain and nervous tissue have formed—are capable of feeling pain. The criteria for defining what makes a human being also vary across philosophy, ethics, and the life sciences. I believe that, at the very least, the ability to perceive and experience pain is one of the key criteria.

Slowly, but surely

Some say that the importance of the life sciences and the biotechnology industry will surpass that of the chemical and manufacturing industries in the future. In fact, biotechnology is regarded as one of the core technologies—alongside artificial intelligence—that will shape the future, and its applications are rapidly expanding across various fields such as medicine, agriculture, the environment, and new drug development. The advancement of these technologies goes beyond mere industrial change; it will also confront humanity with new ethical challenges unlike any we have faced before. Therefore, we must be more cautious than ever. Humanity has repeated countless mistakes throughout history. If genetic engineering is misused or abused, we cannot rule out the possibility that it could lead to consequences far more serious than those caused by money or weapons.
Nevertheless, we must move forward. The history of humanity has ultimately been a history of striving for survival and a better quality of life. To build safer homes, secure more food, and live longer, healthier lives, we have constantly changed and evolved. Genetic engineering may well be a technology that fits into this continuum. Humanity has discovered a new possibility for alleviating yet another form of suffering that remains unresolved. The tide of change has already begun. What matters is not unconditionally accepting or rejecting this trend, but guiding it in the right direction based on thorough verification and social consensus. In this way, humanity will once again advance to a new stage—slowly, but surely.