The Designer Baby Quandary- An Insight Into Gene Editing And Its Legality

The avid interest being taken into gene editing is due to its potential for both, the prevention and treatment of various diseases. It seeks to provide treatment for many complex diseases such as mental illness, cancer, HIV and others.

The title CRISPR babies was given to the first three genetically engineered children. Herein, the embryos of these babies were modified using the CRISPR technology in an attempt to prevent them from inheriting HIV from their fathers. The scientist who applied this technology, He Jiankui, was sent to prison for three years for illegal medical practices. His experiment was first announced in the second international summit conducted by the U.S National Academy of Science and medicine, Royal Society of U.K and the Academy of Sciences of Hong Kong.^[1]

India has banned germline gene editing and reproductive cloning. Further there is also a prohibition on clinical trials of xenogeneic cells, which means the cells that belong to members of different or varying species. Further the prohibition of germline gene editing is with the view that it may lead to the creation of designer babies, inducing unnatural advantages. Although in India, gene editing in terms of germline editing is prohibited, editing for therapeutic reasons is allowed, though highly regulated. To shed some more clarity, germline gene editing and gene editing are related, although different. While gene editing particularly focuses on editing individual, specific genes. This process can be carried out even on other cells and tissues other than the sperm or egg cells meant for procreation.

Germline gene editing is the editing of genes in these reproductive cells or early stage embryos. The reason for the controversial nature of germline gene editing is that, the editing or alteration that has been made, will be passed down and inherited, which raises the concern of ethics, morale as well as safety.

The process of gene editing is accompanied by the various safety concerns, and concerns over the life that a gene edited human would have to lead, in case of a mishap or failure. Further, unlike various other medical processes, since gene editing is often sought to be done at the embryo stage of development, it is impossible to get the consent of the future generations who will have to live with it.

The genome editing technology was developed in the 1900’s, and CRISPR (Clustered regularly interspaced short palindromic repeats) in 2009.

A 2015 instance in the United Kingdom, had a one year old girl’s genes edited in order to cure her from Leukaemia^[2] using the TALENS technology instead of CRISPR, although it saved her life, it is still viewed warily, due to various risks and ethical concerns that it poses. Apart from the general ethical and moral concerns that tag along with the process of gene editing, there are also various safety concerns, some of which are; the editing may lead to some inadvertent changes that could negatively affect the health of a person whose gene is being edited, along with their future generations; gene editing technology still being in its early stages of development may have multiple restrictions, wherein the better option would be to begin its practice on a large scale level upon further research and understanding of it and its consequences.

Concerns Of Gene Editing

There are myriad concerns of failure or mishap in the process of genome editing, wherein the consequences to be suffered could be large and dubious, as scientists still cannot confirm the effects of such errors. The primary technical apprehension is that during the process of gene editing, the editing tools could make a cut at the incorrect spot. Further, various ethical concerns also flood the minds of the authorities burdened with the responsibility to ensure the safety of its citizens. Some of them are moral dilemmas that may seem like a relevant although solutionless question when introspected.

For example the question of whether it is acceptable to genetically edit the genomes of an embryo, when there is no consent of that embryo. Some may answer that the consent of the parents may be enough, although the issue on the face of it is that any repercussions due to its failure will have to be wholly suffered by the embryo and not the parents or the doctors. Along with the same, there is a concern about whether such a power must be allowed to be wielded by scientists, as these edits would be passed down through the descending generations. Therefore, the consent for the same, if looked at in a wholesome manner, must be taken from not only the embryo sought to be edited, but also various embryos that have not even been conceived, but will be in the future.

Yet another relevant concern is regarding social issues. There is already a wide gap of inequalities between the rich and the poor. This can be seen in terms of income, health, education, facilities and opportunities, etc. the pressing concern here is whether such medical procedures could lead to the worsening of the inequality gap between the rich and poor, simply because the gene therapies are naturally expensive, and only the rich will be able to afford it. ^[3]

This increase in inequality can be seen in terms of, for example, health as there will be an increased ratio of better health among the rich due to there accessibility to the gene editing technology, which will help them improve their resourcefulness in terms of workforce and manpower, thereby also widening the income gap between the two classes.

Similarly a new rising concern is regarding whether people will begin to use this technology for producing designer babies, and whether their existence would imbibe a sense of burden among the rest of the society. For example, artificially making a person have heightened strength, speed or even height.

The Designer Baby

The idea behind the notion of designer babies is that parents will choose in what manner they would like their child’s genes to be edited. Be it the eradication of diseases, or the enhancing of certain qualities. While some suggest that parents must have the right to make such decisions for their children, there are more than just a few floating quandaries regarding the same. Genetic enhancement may lead to a section of the society that is more enhanced and efficient, although this will develop a society wherein the concept of equal opportunity will increasingly lose its meaning. Further the gap could potentially increase so much between the rich and poor, that the modified individuals will be able to achieve white collar jobs and lifestyles, whereas those who did not have the privilege of having their genes edited will be subjected to menial jobs.

Further, editing of the genes by parents in terms of changing the skin colour, could further discrimination based on colour along with other inequalities that follow it. The idea behind avoiding such modification is that, when there is a prejudice against something, the way forward is to learn and educate people towards tolerance rather than to accommodate those prejudices.

While some claim that this might simply be an ethical horror waiting to happen, the rest celebrate this technology with the claim that the future can now accommodate a superior class of people, wherein everything will become more efficient and an improved version of what exists now. The most appreciated aspect is that various life-threatening diseases, or diseases that may obstruct one’s day to day life can be eliminated or reduced by way of gene editing.

Often parents who have diseases such as diabetes, cancer, cholesterol, asthma and other such diseases running in the family may be worried about the same being inherited by their children. This is a method that can alleviate their worry as it could potentially reduce the chances of that child becoming a patient of that illness.

Gene editing is highly regulated in most countries. This is due to the violation of the ethical principles in the ‘Declaration of Helsinki-Ethical Principles for Medical Research Involving Human Subjects’.

A study from the CRISPR journal suggests the number of countries that regulate such gene editing. According to the same, just about 40 out of 96 countries have explicit policies with regards to germline gene editing, 23 have banned research about it and 11 have permitted.

Whereas, with reference to heritable gene editing, 78 of 96 nations have addressed the subject matter. Herein, about 70 countries in total have placed prohibition on the same whereas, 5 countries have also banned it, although with certain stated exceptions.

In Association for Molecular Pathology v. Myriad Genetics (2013)^[4] a case revolving around gene patenting; herein, Myriad Genetics had patented certain genes in relation to increased susceptibility to breast and ovarian cancer. As the outcome of the case, the court held that patenting of the BRCA genes, as done by Myriad Genetics is invalid because these genes occur naturally and do not have the sanction to be patented as under the law in the U.S. Although it was the defendant’s contention that the genes they patented were not naturally occurring, and were in fact purified, the court sustained its statement that while naturally occurring genes cannot be patented, synthetic genes that may have been tampered with can be eligible to be protected via patent. This case is known to be prominent, as it cleared further way, promoting gene related research.

Although India has not as of now dabbled in many gene editing related cases, there has been a significant increase in interest in this field, as it can be seen by its ICMR regulations and guidelines for the research of human gene editing.

Apart from all of the mentioned concerns and barriers for human gene editing, yet another major factor that plays a role in opposition to a more full fledged practice of gene editing is religion. With its prominent opinions on various topics such as its stark opposition against artificial reproduction, the Catholic Church has also given statements on gene editing. According to the church, gene editing would not be an ethical act, as ‘the only way in which a gene must be bequeathed is through the natural act of procreation, and not any other artificial method.’ Further, it also contends that such gene editing strictly for therapeutic purposes is nothing but prudent, although the manipulation of genes which would be inherited by the following generations would be undesirable. They believe that such a manipulation would be a distasteful contrast to an individual’s dignity and integrity to his or her identity.^[5]

On the other hand, religions such as Judaism view humans as collaborators alongside God in the process of creation, and that this is a favourable technique that is being explored, and there is no reason to fear that humans are now ‘playing God’. similarly, Buddhism, having its main motto as compassion and altruism, considers this technology that could potentially cure or protect someone from the sufferings of a genetic disease to be advantageous to humanity, although it does question the germline cell therapy in humans as it can have various ethical concerns.^[6]

In conclusion, the daunting question of the legality of human gene editing is complex. If it were to be made completely legal and freely practised, it would first have to deal with a myriad ethical, moral and safety concerns that arise on the face of it. While suffering in terms of genetic disorders could be reduced or eliminated to a considerable extent, the risk of creating social inequalities will always subtly lurk in silence. If only the financially well off were to be able to access such a procedure of modification, quite naturally it would in the future create a section of people, healthier and better, helping them have an unscrupulous advantage over the others, allowing them to be more efficient and productive, leading to social and economic inequalities than those that already exist.

Views are personal.