Rights at the centre
Context
- The Supreme Court recently declared that children have the right to have their genetic information kept private in Deoxyribonucleic Acid (DNA) tests without their consent.
- The judgement came in response to an appeal made by a man who questioned the legitimacy of his second kid while charging his wife of an adulterous relationship.
- On the circumstances of the case, the Supreme Court found that no adverse inference could be made because the mother refused to submit the infant to a paternity test.
About judgement
- Genetic information is Personal and intimate. It reveals the soul of an individual.
- It enables people to make informed choices about their health, privacy, and identification.
- As part of their basic right to privacy, children have the right to have their genetic information protected from DNA testing in divorce procedures.
- Article 21 of the Indian Constitution guarantees this.
- It is critical that children do not become the focus of the conflict between spouses.
- The United Nations Convention on the Rights of the Child recognizes the rights to privacy, autonomy, and identification.
- The Convention recognizes that individuals, including children, have power over their personal boundaries and the means by which they determine who they are in connection to others.
What is the Current status of Genetic information in India?
Genetic Data and Privacy
- Genetic data privacy refers to the practice of not allowing a third party or anyone else to use a person’s genetic data without his consent.
- Personal information can now be extracted easily from DNA data, infringing on privacy rights.
- While genetic study has great potential for the future, improper implementation can have negative effects. Because genetic data is so important as the blueprint for a person’s physical being, privacy protection is critical.
Benefits of Genetic Information
- Genetic data can disclose information about illness, health, and lineage.
- This information can raise a person’s consciousness of their own health, be used in medical research, and allow for early disease intervention.
Disadvantages of Genetic Data
- Genetic data, which includes a person’s DNA and chromosomes, can disclose personal information about health and ancestry. Direct-to-consumer genetic tests are not always accurate and can expose confidential information unintentionally. Unauthorized access to genetic data can have a detrimental effect on a person’s privacy and livelihood, such as unwanted reactions from companies, insurance providers, and the government.
Status of Genetic Privacy
- In 2018, the Delhi High Court decided against United India Insurance Corporation for discriminating against a person with a heart disease that was believed to be a genetic disorder in health insurance.
- Genetic discrimination violates Article 14, which states that everyone should be treated equally under the law.
- In case of justice KS Puttaswamy (Retd.) & Anr. v. Union of India, the Supreme Court of India jointly declared that the right to privacy is a fundamental right under Article 21.
- Genetic discrimination is prohibited in almost every country. The Genetic Information Non-discrimination Act (GINA), a federal law that protects individuals from genetic discrimination in health care and employment, was enacted in the United States in 2008.
Way forward
- Legally, there is a need to create more comprehensive privacy laws and policies that are particularly tailored to genetic information.
- It may include stricter requirements for getting informed permission for genetic testing and data exchange, as well as penalties for unauthorized access or use of genetic data.
- Technological developments in encryption, safe storage, and data exchange methods may provide chances to improve privacy protections.
- Homomorphic encryption methods, for example, could be used to enable calculation on encrypted genetic data without exposing the underlying information.
- From an ethical standpoint, it will be critical to maintain public discourse and education about the benefits and dangers of genetic testing and data sharing.
- It may include efforts to promote transparency, openness, and responsibility in the collection, use, and sharing of genetic data, as well as programmes to promote equitable access to genetic testing and benefits.