Article:
The recent Supreme Court ruling, affirming children’s right to protect their genetic information from DNA testing without their consent, has heightened the discussion on genetics and privacy. This significant decree draws attention to the crucial privacy issues surrounding genetic data, which is intrinsically personal and intimate – revealing not just potential health information but also our very identity.
The Supreme Court Judgement
The case resulting in this landmark decision involved a man questioning the paternity of his second child while alleging an adulterous relationship by his wife. Interestingly, the court held that no adverse inference could be drawn as the mother refused to subject the child to a paternity test.
The judgement asserts that genetic information acts as a mirror to a person’s individuality which enables them to make informed choices about their health, privacy, and identity. The court recognized the right of children to protect their genetic information during divorce proceedings, reinforcing it as their fundamental right to privacy under Article 21 of the Indian Constitution.
Further, the court stressed the significance of shielding children from becoming the focal point of discord between spouses. It drew from the United Nations’ Convention on the Rights of the Child, which acknowledges an individual’s right over their personal boundaries, and their ability to define their identity in relation to others.
The Complexities of Genetic Data Privacy in India
India’s stance on genetic data privacy aims to prevent third parties from using a person’s genetic data without their consent. However, technological advances have complicated matters, making it increasingly possible to extract personal information from DNA samples thus infringing on privacy rights.
While the prospects of genetic research are promising, misuse can lead to damaging repercussions. Given that genetic data provides a blueprint of a person’s physical being, its confidentiality becomes paramount.
The Double-edged sword of Genetic Information
Genetic information can offer insights into a person’s health, ancestry, and predisposition to diseases. Such knowledge can enhance their health awareness, aid medical research, and facilitate early intervention for disease prevention.
However, this information is a trove of personal data about health and lineage. Direct-to-consumer genetic tests often lack reliability and can result in the unintended disclosure of private information. Unauthorized access to genetic data might lead to undesirable responses from employers or insurance providers, infringing on an individual’s privacy and life.
Indian Legal Precedents on Genetic Privacy
In 2018, The Delhi High Court condemned United India Insurance Company’s discrimination in issuing health insurance to an individual with a supposed genetic disorder, deeming it as a violation of Article 14, which ensures equal treatment under the law for all.
The Supreme Court of India in Justice KS Puttaswamy (Retd.) & Anr. v. Union of India, unanimously upheld that the Right to Privacy is a fundamental right under Article 21. Genetic discrimination has been rendered illegal in most countries, with the United States passing the Genetic Information Non-discrimination Act (GINA) in 2008, to prevent genetic discrimination in health care and employment.
The Way Forward
From a legal perspective, there is a call to develop more specific privacy laws for genetic information. It could entail stricter guidelines for informed consent procedures for genetic testing and data sharing, and penalties for unauthorized use or access. Technological advancements can potentially fortify privacy protections through advanced encryption, secure storage, and data sharing protocols.
Ethically, fostering public dialogue and education about the risks and advantages of genetic testing and data sharing is critical. Promoting transparency, accountability, and equity in the collection, use, and sharing of genetic data should be prioritized. This collective approach can enable us to leverage the potential of genetic information while safeguarding our fundamental right to privacy.
