The field of genetic science has been rapidly evolving in recent years, leading to developments that were once thought impossible. One of the most significant advancements has been gene editing, the modification of the DNA sequence of a living organism. 

According to Britannica, gene editing uses specially engineered nuclease enzymes to target specific DNA sequences. These enzymes cut into the DNA sequence, allowing for the removal of existing DNA and inserting new DNA. 

Gene editing is performed with technologies such as CRISPR-Cas9, a powerful tool used for precise DNA alterations to treat diseases or to modify traits. Since its discovery in 2012 by Jennifer Doudna and Emmanuelle Charpentier, it has been applied in various ways such as to modify laboratory animals and crops, to destroy antibiotic-resistant bacteria, or to treat genetic diseases. 

In humans, there are two main types of gene editing: somatic and germline. Somatic gene editing is the editing of cells in an individual other than their reproductive cells, and the changes are not passed on to their offspring. Germline gene editing, on the other hand, is the editing of embryos or an individual’s reproductive cells, meaning future generations will inherit the changes. 

Somatic gene editing holds immense potential for treating severe illnesses. In fact, there have been many successful clinical trials of CRISPR in recent years. For example, the Innovative Genomics Institute reported that, in 2019, a clinical trial in Germany treated a patient with beta-thalassemia, a genetic blood disorder, using CRISPR-based therapy. Since then, at least fourteen more individuals have been treated. They have undergone remarkable recoveries and are now free from needing blood transfusions. 

Additionally, Intellia Therapeutics treated fifteen patients with hereditary transthyretin amyloidosis, a protein-folding disease. Most side effects were mild, and all patients showed a reduction in TTR protein levels, which are the toxic proteins that interfere with organ and tissue functions. 

The inspiring story of Victoria Grey corroborates the great potential of gene editing in treating diseases. In 2019, Victoria Grey became one of the first patients to receive the CRISPR-Cas9 gene editing treatment for sickle cell disease. Before the treatment, she suffered severe pain, which she described as “being struck by lightning and hit by a freight train all at once,” and depended on strong drugs to ease symptoms. 

Grey’s treatment, where doctors extracted her bone marrow cells and replaced the genes causing the disease, led to drastic improvements and transformed her life. In an interview with CNN in 2023, she said, “You know that a person who was once suffering in life, was miserable, now is able to be a part of life and enjoy it.” Her journey exemplifies the power of gene editing and brings hope to many others with genetic diseases. 

At the same time, there have been unsuccessful cases of CRISPR clinical trials. For instance, the Science History Institute discussed that Jesse Gelsinger, a high schooler with a rare metabolic disorder called ornithine transcarbamylase deficiency syndrome (OTCD), participated in a clinical gene editing trial for his condition in 1999. However, he developed severe side effects such as disorientation, jaundice, blood clotting disorder, and multiple organ failure, and four days after the treatment, he was declared brain dead. 

Investigators concluded that Gelsinger likely experienced antibody-dependent enhancement, ​​a rare phenomenon. They believed he had encountered the adenovirus used in the trial before, which led to the creation of antibodies that intensified the reinfection instead of combating it. Gelsinger’s accident reflects the risks and complexity of gene editing. 

Although gene editing sparks controversy due to safety concerns, I believe somatic gene editing for treating severe illnesses should be available to consenting adults. People suffering from devastating diseases deserve access to the latest medical advancements that can alleviate their suffering and improve their life quality. 

However, there should be strict requirements for individuals to be able to receive treatment so that people will not misuse the technology. For instance, gene editing could be abused for non-therapeutic purposes, such as enhancing physical appearance or intelligence, posing a difficult ethical concern. To prevent such misuse, regulations should include thorough screening processes to ensure treatments are only approved for serious medical conditions. 

Germline gene editing, in contrast to somatic gene editing, raises significant ethical concerns, as editing the genes of embryos or reproductive cells presents risks that extend to future generations. While proponents suggest it could improve human health by preventing diseases before birth and reducing healthcare burdens, critics highlight its associated risks.

In The New York Times, researchers Dr. Dieter Egli and Dr. Maria Jasin revealed that using CRISPR-Cas9 on human embryo cells can lead to cells discarding large sections of their DNA. Such alterations could cause serious consequences, as the affected cells might fail to function correctly. Considering such risks, there must be informed consent from those who will undergo gene editing. However, since embryos and future generations cannot consent, germline gene editing should not be allowed.

To address the complex issue, there should be clear laws that prohibit germline gene editing practices that lead to pregnancy. This includes both the implantation of edited embryos into a mother and the alteration of reproductive cells of individuals who intend to become pregnant. 

However, according to Nikkei Magazine, while some countries, such as France and Germany, have laws banning germline editing that leads to pregnancy, that is not always the case. For example, Japan and America may have some regulations, but there are no explicit laws prohibiting germline editing that leads to pregnancy. This reality underscores the need for actions to be taken to enact laws that prohibit germline gene editing that leads to pregnancy. 

To summarize, I advocate for the universal availability of somatic gene editing for treating severe illnesses to all consenting adults. However, to avoid ethical problems and risks to future generations, laws should be enacted to prohibit germline editing that leads to pregnancy. This approach prioritizes individual autonomy regarding one’s genes and relief from suffering. 

To make the change a reality, the ultimate goal is for new laws to be passed. As a community, we can support initiatives and organizations that promote ethical guidelines. Increased support could lead those organizations to reach out to lawmakers and make changes in policies. 

Several organizations advocate for the responsible use of gene editing technologies. These organizations include the National Institutes of Health, the Innovative Genomics Institute, the American Society of Gene & Cell Therapy, and the Center for Genetics and Society.

While gene editing can potentially treat severe illnesses and improve human health, it also raises significant ethical concerns, particularly regarding germline editing. We must take the initiative to stay informed in order to form educated opinions and make thoughtful decisions. 

Supporting organizations and initiatives that advocate for ethical guidelines and regulations for gene editing technologies can contribute to broader changes in policies and practices. Through education, advocacy, and responsible regulation, we can use gene editing to vastly improve life quality while protecting ethical values.