Author: Khushi Bagga
III Year| Dharmashastra National Law University

Introduction:

In November 2018, Lulu and Nana gave their first cry out into the world. These beautiful Chinese twin girls were the result of a quantum leap technological experiment called Human Germline Editing, conducted by a Chinese doctor, He Jiankul[1].

Human Genetic Modification is a process that aims at manipulating the Human Genome using molecular engineering techniques[2]. Thus, Human Genome is the over-all set of genetic material that is present in the human being[3]. As a result, it attempts at changing this genetic material that forms the basis of a human’s natural characteristics.

Somatic and Germline Genetic Modification:

Genetic modification can be of two types: Somatic genetic modification & Germline genetic modification[4]. Somatic genetic modification edits genes that affect only the existing person. Whereas the latter affects all the genes of a person, including eggs and sperm, which further pass on to future generations. We will try to aim at the latter in this article.

Germline genetic modification completely changes the genes in eggs, sperm, or early embryos, often termed as ‘inheritable genetic modification’ [5]. These modifications would appear in all the cells of the unborn and also in all the further generations reproduced by them, unlike Somatic genetic modification.

With this modification, the Chinese scientist tried to alter a targeted gene called CCR5 with the aim of creating babies resistant to HIV[6]. This breakthrough news consequently sent a wave of awe in the scientific community all around the world. And also a wave of fury in the social and ethical community of human rights.

Human Genome Editing and Human Rights Outcry:

This outburst of the Human Rights community seems understandable. Human Germline Editing is a rather ethically controversial issue. Simply because it gives the power in hands of humans to create humans of their choice.

Most of the countries around the world have one or the other existing laws prohibiting human genome editing practices. Some countries outrightly ban and impose criminal sanctions on such practices, like Austria, Canada, Brazil, Germany, and others. On the other hand, there are countries like China, Congo, India, Thailand, the USA, the UK that allow such scientific modifications only for research purposes[7].

But it seems that Human Rights activists oppose such scientific experimental practices as well. This tussle between Human Rights and bioethics, calls for a strong definition of Human dignity.

Change in the Definition of Human Dignity:

When we say we must protect the dignity of a person as a basic legal principle of Human Rights, we refer to protecting not just the individual rights and freedoms of that person but also the collective interests of the society and humanity at large upon which the human rights are built[8].

The ‘Individual freedoms and rights’ aspect of Dignity is fulfilled when we take into consideration clinical safety, new technologies providing a path to fight against incurable and deadly diseases, etc. However, the concern here is the Humanity aspect of Dignity which may impose completely new kinds of discrimination on the upcoming human race. This will have a negative impact on further generations. This may also result in social-economic inequalities on a genetic and biological level, as only a section of the society will be able to afford such an expensive genetic modification on their future generations. This would in turn lead to problems of self-perception and low self-esteem, especially amongst teenagers.

All this puts the human dignity of the whole of humankind in jeopardy. Biomedical technologies would ultimately lead to the creation of a section of society that would have similar qualities. It would also open possibilities of one human being designing another, deciding its characteristics, its DNA, and the basic building blocks of that human and its generations to come[9].

International Legal Approaches to Human Genome Editing:

The main question that arises here is whether this controversy is between Human Germline Editing and the recognized Human Rights or not. This is not an ancient altercation since there are only a few international conventions and treaties in place for the same. Moreover, even these are not well developed to deal with this biomedical and moral disagreement.

It is interesting to note that the first binding convention in the field of biomedical law was signed in 1997, which was a European agreement named ‘Oviedo Convention’[10]. Modification of the Human Genome is specifically prohibited in Article 13 of the convention[11]. It is pertinent here, that human dignity is the underlying principle of this categorical ban which seeks to protect both individuals and humanity.

Outside of this convention, UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997)can also be considered[12]. However, being a declaration, it is not a binding instrument. Furthermore, the declaration does not put a strict ban on germline modification of humans.

Conclusion:

No doubt, human germline editing and its tussle with human rights and human dignity are at its nascent stage, but steps must be taken to develop it further. The scream for further development must be a louder one as one might not realize it now, but it certainly is a fight for humanity.

The existing, ill-developed conventions and declarations only put a temporary stop to Human genome manipulation. There exists no convention or any legally binding instrument that puts a complete ban on such manipulation of human genes. Some allow it for experimental and therapeutic purposes while some prohibit it completely.

UNESCO’s declaration does not even prohibit the same but simply puts a moratorium. Before the situation reaches its pinnacle, there is a severe need to put a complete ban on this practice. It is essential to have legally binding instruments, if not internationally, then as national legal development. Lastly, should individuals have the ability to alter the genetic constitution of their descendants? [13] There has to be an adamant no to this question or else, human rights beware!

[1] Meet Lulu and Nana, the world’s first CRISPR genome-edited babies, GET ANIMATED, (5^th March 11:38 AM) URL: https://getanimated.uk.com/meet-lulu-and-nana-the-worlds-first-crispr-genome-edited-babies/

[2] Human Genetic Modification, CENTER FOR GENETICS AND SOCIETY, (5^th March 2021, 11:41 AM) URL: https://www.geneticsandsociety.org/topics/human-genetic-modification

[3] Universal Declaration on the Human Genome and Human Rights, UNESCO, (5^th March 2021, 11:42 AM), URL: https://en.unesco.org/themes/ethics-science-and-technology/human-genome-and-human-rights

[4] Human Genetic Modification, CENTER FOR GENETICS AND SOCIETY, (5^th March 2021, 11:41 AM) URL: https://www.geneticsandsociety.org/topics/human-genetic-modification

[5] Inheritable Genetic Modification Basic Science, CENTER FOR GENETICS AND SOCIETY, (5^th March 2021, 11:46 AM) URL: https://www.geneticsandsociety.org/internal-content/inheritable-genetic-modification-basic-science

[6] Antonio Regalado, Exclusive: Chinese Scientists Are Creating CRISPR Babies, MIT TECHNOLOGY REVIEW, (5^th March 2021, 11:49 AM) URL: https://www.technologyreview.com/2018/11/25/138962/exclusive-chinese-scientists-are-creating-crispr-babies/

[7] Francoise Baylis, Marcy Darnovsky, Katie Hasson, Timothy M. Krahn, Human Germline and Heritable Genome Editing: The Global Policy Landscape, LIEBERTPUB, (5^th March 2021, 11:59 AM) URL: https://www.liebertpub.com/doi/full/10.1089/crispr.2020.0082

[8] Roberto Andorno, Human Dignity and Human Rights as a Common Ground for a Global Bioethics, 34 J. Med. Philos. 223 (2009).

[9] Deryck Beyleveld & Roger Brownsword, Human Dignity in Bioethics and Biolaw (2002).

[10] Parliamentary Assembly of the Council of Europe, The Use of New Genetic Technologies in Human Beings, PARLIAMENTARY ASSEMBLY, (5^th March 2021, 12:13 PM) URL: https://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=24228&lang=en

[11] Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Huma Rights and Biomedicine, COUNCIL OF EUROPE, (5^th March 2021, 12:18 PM) URL: https://www.coe.int/en/web/conventions/full-list/-/conventions/rms/090000168007cf98

[12] Universal Declaration on the Human Genome and Human Rights, UNESCO, (5^th March 2021, 12:22 PM) URL: https://en.unesco.org/themes/ethics-science-and-technology/human-genome-and-human-rights

[13] Rewriting the human genome, rewriting human rights law? Human rights, human dignity, and human germline modification in the CRISPR era, OXFORD ACADEMIC, (5^th March 2021, 12:25 PM) URL: https://academic.oup.com/jlb/advance-article/doi/10.1093/jlb/lsaa006/5841599

Editor: Mansi Mathpal