Gene editing- as previously discussed, can revolutionize the medical field and improve human lives on an incredible scale. It can be considered one of the most extraordinary and fundamental discoveries in research. However, it raises numerous complex legal and ethical concerns, making it rarely, if not banned, used. This blog post will delve into this matter’s background, challenges, techniques, and current legality.
Gene editing is the “ability to make highly specific changes to the DNA sequence of a living organism, essentially customizing its genetic makeup.” The primary tool used for this is CRISPR-Cas9: a molecular device derived from naturally occurring DNA sequences in bacteria and archaea. It has allowed researchers to target a specific DNA sequence where they introduce cuts into the genome to remove and insert new DNA sequences. Among other methods, such as TALENs and ZFNs, CRISPR has emerged as the most effective, making it crucial in genetics and medicine.
CRISPR has been used in therapies treating certain human diseases such as diabetes, sickle cell disease, cancers of blood-forming tissues like leukemia and lymphoma, chronic infectious diseases like AIDS, and inherited impairment in vision, to name a few. However, the journey to reach this point hasn’t been easy. Early attempts to use gene editing focused on minimizing the consequences instead of correcting genetic mistakes. Although effective in some cases, it was tricky and limited.
But, just like everything else, there is always a legal and ethical side. The implications for gene editing are extreme, considering these are actual human lives and genetic material at play. The legality of human gene editing varies across countries. China, India, Ireland, and Japan outlawed gene editing while the U.S. hasn’t banned it, a moratorium imposed under the vigilance of the FDA and guidelines from the NIH. In the UK, “the legislation of medical use of mitochondrial replacement is likely to lead to legal permission for the modification of germline nuclear genome that can be adjusted by genome-editing technology.”
Additionally, while some countries explicitly prohibit human germline engineering in reproduction, others allow ut with certain exceptions. The “Declaration of Helinski-Ethical Principles for Medical Research Involving Human Subjects” (“Declaration of Helinski” for short) serves as a widely accepted ethical principle for medical research involving human subjects and is referenced in the judgment against Jiankui He.
The first gene-edited human babies were born in China in late 2018, triggering widespread criticism and debate over the experiment. The twin infant girls carried an edited gene that reduced the risk of HIV infection. The researcher- Jiankui He- faced three years of jail due to China’s guidelines and regulations banning gene editing. This event highlighted the need for “urgent improvement of ethics governance at all levels, the enforcement of technical and ethical guidelines, and the establishment of laws relating to such bioethical issues.”
Another well-known case of using human-genome editing is that of Victoria Gray. Victoria Gray has sickle cell disease, an inherited red blood cell disorder in which the cell sickles and becomes hard and sticky, forming the shape of a ‘C’. She had volunteered to participate in the first attempt to use CRISPR to treat her disease. The disease that had plagued her since she was a baby, leaving nightmarish nights and horrible pain in its wake, now existed in memory as something that only once existed as part of her life.
Considering this, wouldn’t it be beneficial to use CRISPR more often to make life easier for individuals? To overcome something that could hinder or even harm us? When we have something that can change people’s lives, why should we ban the use of it?
We must establish ethical guidelines for selecting patients, defining eligible diseases, and implementing restrictions on who can use CRISPR and under which circumstances. Oversight by government organizations or regulatory agencies, such as the FDA, could ensure responsible usage for this activity. By doing this, we can prevent misuse of this for non-medical practices, such as cosmetic alterations.
Human gene-editing is a powerful tool that, while beneficial, serves a number of significant legal and ethical issues. While this technology holds the key to improving the lives of individuals facing life-threatening illnesses and genetci disorders, it requires careful regulation to balance the benefits and harms. If we want to use CRISPR and other similar technologies to advance the human race and improve the lives of those in need, we need to establish appropriate laws and regulations so it doesn’t get out of gads.
“Applications and Controversies.” Encyclopedia Britannica, www.britannica.com/science/gene-editing/Applications-and-controversies
“CRISPR.” Encyclopedia Britannica, 14 Oct. 2022, www.britannica.com/technology/CRISPR
“Legal Reflections on the Case of Genome-edited Babies.” BioMed Central, 14 May 2020, ghrp.biomedcentral.com/articles/10.1186/s41256-020-00153-4#:~:text=Early%20embryo%20genome%2Dediting%20for,accepted%20by%20the%20international%20community
“What is Gene Therapy?: MedlinePlus Genetics.” MedlinePlus – Health Information from the National Library of Medicine, https://medlineplus.gov/genetics/understanding/therapy/genetherapy/