- Gyanda Kakar, BSc. LLB (Hons.), Gujarat National Law University
Introduction
In 2018, He Jiankui, a Chinese biophysics researcher, launched an initiative to help childless couples suffering from HIV become parents without passing the same to their offspring. The participants were given regular in vitro fertilization treatments as well as the option of using CRISPR gene editing (CRISPR/Cas9). The latter being a revolutionary method that alters DNA while the embryo is still developing. He modified the genomes of embryos using CRISPR to remove a gene component called “CCR5” in an attempt to give genetic resistance to HIV. The clinical investigation was carried out in secrecy till November 25, 2018 when the MIT Technology Review broke the news based on information received from the Chinese clinical trials registry, and the specifics of the experiment were disclosed. After this, he immediately announced the birth of Lulu and Nana, the first genetically engineered infants! He was imprisoned, subjected to a fine of about 3 million dollars, and was banned from performing any further research in human reproductive technology.
Should scientists use gene-editing technology on human embryos, changing the basic composition of the human being for the sake of illness prevention? Apart from this, another question is that should gene-editing be used for cosmetic enhancements, for instance, blue-eyes in children? The potential advantages are appealing but give rise to substantial bioethical problems, ranging from unintended mutations or potentially permanent abnormalities, the destruction of human embryos to the development of “designer babies” and the blurring of the lines between therapy and “improvement.” The legal concern which arises from this is whether the law can keep up with such advances in medical science. This article will look at the ethical, moral, religious and practical issues that we may confront as a result of this relatively new implication of DNA editing.
Gene Editing and the Technique
For the uninitiated,CRISPR-Cas-9 effectively allows scientists to ‘snip’ DNA fragments or eliminate any undesired genetic sequences from an individual’s DNA, such as inheritable disorders. Once the DNA pieces have been ‘snipped off,’ the cell’s pre-built repair processes kick in to fix the damage. New sequences can be integrated into the DNA during this process. This gene-editing method can even be employed in tandem with IVF to permit alteration of the human germline. As a result, some critics have accused it of paving the way for the development of ‘designer babies.’
Currently, there are two types of gene therapies, namely, somatic and germline. Somatic gene therapy involves the transfer of genes into the patient’s somatic cells, such as their bone marrow cells. As a result, the new DNA is not incorporated into the eggs or sperm. Germline treatment involves the transfer of DNA into the cells of the body that create reproductive cells such as eggs or sperm. This technique raises substantial ethical issues of the which are discussed in the following section.
Ethical, moral and social issues
Some bioethicists like Dr. Smith believe that research in this field will provide hope to parents who are in danger of passing on significant genetic diseases to their future offspring. According to recent research, the only option to deal with many disease-associated genes within an embryo is through genetic alteration. He stated that the human germline - cells that transcend generations - was “far from ideal” with nature offering only modest protection from illnesses that tend to appear later in life.
However, the author believes that at this stage scientists simply do not know, for example, if knocking out a certain gene may have unforeseen health repercussions in the future. The genetic code is intricate and interrelated and even a minor, well-intentioned change can have far-reaching consequences. This might raise questions about informed consent since there are uninformed risks. Furthermore, genetically changing human embryos will alter their germline (sperm and eggs), implying that such changes will be passed down to future generations. To date, CRISPR has mostly been used on people who have already been born. In context of the previously mentioned experiment by He Jiankui, the newborns were genetically edited at the embryo stage. Thus, not only their DNA was altered but their whole lineage can be impacted by such experiment. Thus, this gives rise to a vicious cycle.
There is also a moral question of how future children are seen. As previously noted, the capacity to manipulate genetic material can lead to the creation of designer babies. It is potentially conceivable for a parent or parents to make the choice that their kid will have a specific eye colour, hair colour, skin colour, and so on. This may have an influence on family dynamics and how society perceives the relationship between arent and child, since children may be viewed as a product similar to a doll, instead of an exceptional human being who has to be cared for. Another aspect resulting from this is the parents of the participants of beauty pageants opting for designing a ‘beautiful baby.’ One might argue that gene therapy may be banned by such pageants but in growing concerns about privacy and patient data, this might be difficult to investigate and enforce. Furthermore, regulations at national or international level may be ineffective because identifying cases of gene-editing maybe extremely difficult. This is especially true considering the birth of the twins Lulu and Nana was kept a secret until it was published by a journal. This may render such regulations toothless.
Another concern is that there is a stark distinction between utilizing genome editing for human development and using it to alleviate physical misery in future kids. For example, gene editing might allow for the introduction of neuro-enhancements to increase memory recall or to improve muscular frame for improved athletic performance. The World Anti-Doping Agency (WADA) now prohibits non-therapeutic types of genetic alteration for performance improvement in sports. Gene therapy, sometimes known as “gene doping,” is widely regarded as immoral and dangerous to athletes. This may result in the need of distinguishing between an athlete who opted for genetic editing to treat disease as opposed to those who opted for it to improve their capabilities. As previously noted, there are additional ethical problems for a parent who seeks to produce a 'designer baby' to have the kid become a professional athlete, resulting in the child being viewed as a commodity rather than a human being.
Aside from ethical problems, there are also economic considerations. Germline editing is considerably expensive and these enhancements may not be covered by medical insurance (they might be considered as an enhancement and not a necessary treatment similar to many cosmetic procedures). If private institutions embrace this technology, it may result in widening an existing access gap resulting from a socioeconomic divide between those who can afford this therapy and those who cannot. This will lead to an increasing genetic gap. If we do not restrict or regulate this now, it might happen that 15 years from now this therapy may be used for enhancements purpose. For instance, this might result in a new normal where job descriptions might require candidates with specific genes. This may result in people turning to gene editing to meet such requirements again contributing to the genetic gap.
As with many medical advances, the danger of confrontation with religious views exists. The capacity to modify a germline cell genetically might be interpreted as conflicting with God's will. As a result, religious communities may reject genetic modifications, as they would be letting scientists “play God.”
There is also a possibility that future kids of parents who did not have the augmentation done for whatever reason (financial, believed risk too great, religion, etc.) may suffer from ailments or be outcasted from society.
Conclusion
The concerns raised by the possibility of DNA alteration create a moral quagmire, comparable to any other scientific advancement that may interfere with the notion of what it means to be human. In such cases, the question is not one of life or death, but rather of “what type of life is worth living?” This might provide an escape route for future descendants of someone suffering from a hereditary condition. Although, germline editing has the potential to improve one's quality of life it can also subject a human being to an overly ambitious treatment with the implications of possibly lifelong flaws.
The author would answer the question asked in the title of this blog negatively. It is a much more prudent idea at this point to focus on research into genetic diseases to find their treatments, rather than risking a specific therapy that could eventually be inherited by future generations. As a result, gene editing should be permitted only if definitive data of its efficacy can be demonstrated, and it should be strictly limited to health-related issues rather than generating designer babies for the few who can afford to subsidize such therapy. In simpler terms, gene therapy should be strictly banned for merely cosmetic purposes.
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