StemCell Therapy

Technological advancements have blurred the borders of natural biological processes by giving humans more control. One such area is that of gene editing that allows us to modify the childs genetic make up to not only prevent diseases, and lead to a healthier life, but also personality traits for a more fulfilling life. However, this raises question on ethics, consent of the child and rights of parents. RAGHAV AHOOJA,addresses this issue with the lens of state involvement in controlling the private realm.

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WE are at crossroads wherein we may be able to customize and design the futures of our future generations. Lawmakers, thus, need to solve the ethical dilemmas brought about by such giant scientific leaps.

Even though it may sound like science fiction, the future is here.

Gene editing for therapeutic purposes (namely gene therapy) is being conducted for the removal of diseases in humans and foetuses both. When changes are made to the somatic cells, the modifications arent hereditary. However, when the changes are made to the sperm, egg, or embryo, the modifications are transferred on to the next generation. It is done through a process called germline gene editing.

It seems like German philosopher Neitzsches post-human concept of bermensch (translated as beyond-man or superman) might become real. Using a technology known as CRISPR, one can not only treat diseases but also customize a baby in terms of intelligence, athleticism, and so on. This can permanently enhance the lineage of the family.

Believe it or not, the future is here.

Somatic gene editing has been approved in countries like the United States, although with restrictions. It is for the Courts and lawmakers to decide whether this right to enhance children for their own welfare falls within the right to privacy of the parents, or whether the state has a right to curtail such an action.

According to American jurisprudence, there is a private realm of family life which the state cannot enter. Yet time and again the state has entered this realm, claiming a legitimate interest in regulating the family, especially for the welfare of the child. Thus, whilst there exists a right to privacy under the Fourteenth Amendment, it is not absolute.

In the famous case of Roe v. Wade, the United States Supreme Court held that the right to abortion is embedded in the right to privacy of the parent bearing the child. While the judgment was pro-choice, gene editing doesnt quite fit the bifurcated and antagonistic pro-choice v. pro-life debate. It gives parents the choice to genetically edit their children, and the aim of such editing inter alia is to eradicate disease and enhance children for their own welfare.

(Credit: Edward Jenner, Source: Pexels)

Germany, as opposed to the US, recognises the unborn as an individual with a genetically determined identity, which is unique and inseparable. According to German courts, as the unborn baby grows, it does not only develop into a human being but develops as a human being and is worthy of human dignity. Such human dignity would also include the right to live a dignified life, which is free of disease. Therefore, a blanket ban on gene editing would be violative of human dignity.

It is quite clear that therapeutic gene editing is not violative of human dignity, insofar its aim is to eradicate disease. However, such human dignity also includes the right to free development of personality.

It is quite clear that therapeutic gene editing is not violative of human dignity, insofar its aim is to eradicate disease. However, such human dignity also includes the right to free development of personality.

A plain reading of the German constitutional text would suggest that non-therapeutic editing for personality factors is violative of human dignity. But to the contrary, heritable gene editing for purposes such as personality building will be permissible for strengthening the autonomy of the child. Furthermore, it must be for the welfare of the child and must not restrict the free development of their personality. A thumb rule could be whether the child would subsequently consent to such a modification.

Thus, there is a tripartite relationship of the right of the parents to choose the genetic makeup of their children, the right of the state to regulate such an act, and the right of the unborn baby to consent to such editing.

In India, guidelines permitting development of therapeutic gene editing products were introduced. Currently, heritable gene editing can only be done for purposes of experimentation and the embryo cannot have a life beyond 14 days. Thus, heritable gene editing is yet not fully permitted in India. However, there is scope as the Indian Supreme Court in K.S. Puttaswamy (2017) recognised that the right to privacy encompasses family affairs and childrearing. This would possibly entail the parents right to enhance their child as an extension of their right to choose.

It is an established position in law that technology mustnt be prohibited due to a mere possibility of harm. Rather, a positivist approach must be adopted so as to do the greatest good to the greatest number. In fact, a recent report by a German government-appointed council of experts stated that heritable gene editing is not violative of human dignity.

Further, a joint statement by the councils of the United Kingdom, France, and Germany stated that heritable gene editing is permissible. However, there must be a risk assessment and the risk must be brought down to a minimum acceptable level.

And that at the heart of this liberty lies the right to define ones own concept of existence, of meaning, of the universe, and of the mystery of human life, without the interference of the state.

The question, when looked at more deeply, is whether the personality and well-being of future generations ought to be subjected to medical decisions or not.

Thus, there is a tripartite relationship of the right of the parents to choose the genetic makeup of their children, the right of the state to regulate such an act, and the right of the unborn baby to consent to such editing.

The American Supreme Court in Planned Parenthood v. Casey has reiterated that the matters involving the intimate choices of a person are central to dignity and autonomy protected under liberty enshrined in the American Constitution. And that at the heart of this liberty lies the right to define ones own concept of existence, of meaning, of the universe, and of the mystery of human life, without the interference of the state.

(Credit: Ian Panelo, Source: Pexels)

Ultra-modern technologies such as artificial wombs make one think whether a birth is really an event, or a process, and if so then where does the process begin?

Partial ectogenesis (the growth of a baby outside the womb) is already happening. But in time, we might be able to carry out full ectogenesis. As the reliability of such technologies increases, so does their capability. The potential to live outside the mothers womb as opposed to the usual 24 weeks would begin right from the stage of development of the foetus, which is at 8 weeks. Further, with the help of biotech, the ability of an unborn baby to live outside the mothers womb might begin right at fertilisation.

Do we fast forward using techno solutionism or do we let evolution do its thing?

The American Courts have held that an individual whether single or married has the right to privacy which the state cannot infringe. Thus, even a single parent, out of wedlock, can bear such a child and the right to genetically edit unborn babies would be extended to them. The mother and father would be on an equal footing while deciding whether to genetically edit the baby or not.

The aim of the process of childrearing is to produce children with favourable traits and personality and allow them to have a dignified life.

In the first such successfully germline edited babies, scientists predict that it might have actually led to having enhanced their ability to learn and form memories. In another case of successful gene therapy, young children were saved from potentially deadly diseases and lives of isolation.

Therefore, the moot question is: Do we fast forward using techno solutionism or do we let evolution do its thing? Where do we draw the line? Should one circumscribe the limits of technology, or let it take a well-designed course?

Believe it or not, the future is here.

Where does that leave us?

It is for us to decide.

(Raghav Ahooja is a final year student at Rajiv Gandhi National Law University, Punjab. Views are personal.)

Excerpt from:
Gene Editing: Do We Have The Right to Genetically Enhance Our Children? - The Leaflet

This entry was posted on September 20, 2020 at 7:56 am and is filed under Gene therapy. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |