Right of Child to an Unmodified Genome Debate

Introduction

The right of a child to an unmodified genome refers to the proposed legal and ethical right of children to be born without unnecessary genetic alterations introduced through genetic engineering, particularly heritable genome editing.

The debate primarily concerns technologies such as CRISPR-Cas9, which can modify DNA sequences in human embryos. Such modifications may be inherited by future generations and could permanently affect the genetic characteristics of a family lineage.

Supporters of this proposed right argue that children should not be subjected to irreversible genetic modifications without their consent. They emphasize bodily integrity, human dignity, genetic diversity, and the child's future autonomy.

Opponents argue that an absolute right to an unmodified genome could prevent parents from using genetic technologies to avoid serious inherited diseases. They distinguish between therapeutic genetic intervention and enhancement intended to produce preferred physical, intellectual, or behavioural characteristics.

The central legal question is whether children possess a right to genetic integrity and whether parents or medical professionals can lawfully modify the human genome before birth.

In India, this debate can be examined through Articles 14 and 21 of the Constitution, reproductive autonomy, medical consent, and international human-rights principles.

2. Case Laws

A. Justice K.S. Puttaswamy v. Union of India (2017) 10 SCC 1

The Supreme Court of India recognized privacy as a fundamental right under Article 21. The judgment emphasized dignity, bodily integrity, and individual autonomy.

Application: A child's genetic integrity may be understood as an aspect of bodily autonomy and privacy. However, the judgment does not expressly recognize a right to an unmodified genome.

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B. Suchita Srivastava v. Chandigarh Administration (2009) 9 SCC 1

The Supreme Court recognized reproductive autonomy as an important aspect of personal liberty under Article 21. It emphasized that reproductive decisions must respect individual consent.

Application: The case supports the argument that decisions concerning reproductive technologies should respect personal autonomy. However, extending this principle to a child's right against genetic modification remains a developing legal argument.

C. Jacobson v. Massachusetts (1905) 197 U.S. 11

The United States Supreme Court upheld compulsory vaccination legislation in the context of public health and recognized that individual liberty may be subject to reasonable public-health restrictions.

Application: This case illustrates the balance between individual autonomy and public health. It may be relevant when considering whether genetic interventions intended to prevent serious inherited diseases can be justified despite the absence of consent from the future child.

D. UNESCO Universal Declaration on the Human Genome and Human Rights (1997)

Article 1 describes the human genome as the basis of the fundamental unity of humanity while recognizing human diversity and dignity. Article 2 emphasizes respect for human dignity regardless of genetic characteristics.

Application: These principles support protection against genetic discrimination and irresponsible genetic engineering. However, the Declaration is not a binding international treaty.

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3. Legal Issues

Parental autonomy: Parents may seek genetic interventions to prevent serious inherited diseases.

Child's future autonomy: A child cannot consent to permanent genetic changes made before birth.

Genetic discrimination: Genetic engineering may create social inequalities between genetically modified and unmodified individuals.

Intergenerational consequences: Heritable modifications may affect future generations who cannot participate in the decision.

Therapeutic intervention: Preventing serious disease may justify carefully regulated genetic intervention, whereas enhancement for preferred characteristics raises stronger ethical objections.

Conclusion

The right of a child to an unmodified genome is an emerging legal concept connected with dignity, bodily integrity, privacy, and future autonomy. Indian constitutional jurisprudence, particularly Puttaswamy and Suchita Srivastava, provides a foundation for examining this proposed right.

However, no established Indian judgment expressly recognizes an absolute right to an unmodified genome. A balanced legal framework should distinguish between therapeutic interventions intended to prevent serious disease and genetic enhancement intended to create preferred characteristics.

The ultimate objective should be to protect the child's health, dignity, and future autonomy while ensuring that genetic technologies are used responsibly.