Genetic Privacy

Genetic privacy is the protection of an individual’s and their family’s personal information, preventing disclosure of their medical and non-medical information and restricting third parties’ access to such personal information. The debate around genetic information and privacy has been on for a while now. Read here to understand the aspects related to genetic privacy.

Recently, the Supreme Court of India ruled that children have the right to protect their genetic information from DNA tests. Genetic privacy has been considered an essential attribute of the right to privacy. Thus, it becomes the child’s fundamental right.

Genetic testing has become popular and affordable over the years, with basic predictive tests available to be ordered online as well.

All over the globe, more people are willing to undergo genetic testing for reasons ranging from paternity testing to estimating the occurrence of diseases likely to develop in the future. The popularity of genetic testing thus gives rise to the question of the safety and privacy of this genetic information.

Genetic Privacy

The concept of genetic data privacy aims to stop anyone from utilizing someone else’s genetic information without that person’s consent.

• The easy collection of DNA samples from individuals and the extraction of personal data from those samples are the results of advances in science and technology.
• These developments, however, violate a person’s right to privacy.

In the future, modern genetic research may be crucial, but it also has the potential to be misused and produce worrisome results.

Genetic data privacy is essential since a person’s genes serve as the blueprint for his or her physical or biological existence.

An individual’s privacy should be respected when their genomic information is used for research, clinical applications, or other uses.

Also read: Genome Sequencing

Privacy in Research

When conducting genomics research, two essential values of scientific research should be balanced:

• the need to share data broadly to maximize its use for ongoing scientific exploration.
• the need to protect research participants’ privacy.

Genomic research in identifiable populations (i.e., specific racial or ethnic groups, geographically defined communities, and members of ultra-rare disease groups) presents unique privacy concerns due to a diminished ability to protect the privacy of these individuals or groups.

Privacy in the Clinic

Because of remarkable advancements in genomics research in recent years, the use of genomic testing has gone from rare to routine in many clinical settings.

This type of testing has clear clinical benefits to the patient; however, it introduces new risks to patient privacy, and patients are potentially vulnerable to the misuse of their genetic information.

Genetic Privacy in Society

Genetic and genomic information is used by law enforcement to investigate criminal acts and within the legal system to exonerate those who have been falsely convicted of crimes.

• Authorities use multiple genetic and genomic tools in forensic contexts.

Direct-to-Consumer (DTC) genetic testing has grown increasingly popular in recent years, and its use is expected to expand.

• Companies analyze individuals’ DNA and can provide information regarding a person’s genetic ancestry or possible genetic risk for certain health conditions.
• In addition to companies that sequence individuals’ DNA directly, more companies now offer their analysis or digital health services to consumers who upload their genetic information.
• DTC genetic tests have limited regulation, and the growth of the DTC genetic testing industry has resulted in vast databases of consumers’ genetic information, raising serious privacy concerns.

Surreptitious DNA testing or testing without the knowledge of the person being tested is another potential threat to the privacy of people’s genomic information.

• Some companies that offer DNA testing allow consumers to obtain genetic analyses of various biological samples without requiring the consent of the individual being tested.
• DNA samples may come from objects ranging from blood stains to a licked envelope.

Benefits of genetic information

• Genetic information may disclose information about a disease, illness, or a person’s health status.
• It can make a person more aware of his or her health.
• A person can learn about his ancestors and distant relatives.
• One’s data can be used in medical research.
• If a person learns about his illness early on, he would be able to take more preventative steps to treat it.

Status of Genetic Privacy in India

In 2018, The Delhi High Court ruled against United India Insurance Company’s discrimination in health insurance against a person with a heart disease that was thought to be a genetic disorder.

• Discrimination in health insurance against people based on their genetic makeup or genetic origin, in the absence of adequate genetic tests and intelligible differentia, is unconstitutional, the court ruled.
• The Supreme Court later partly blocked the order.

A law that prohibits genetic discrimination is urgently needed in India today. We must avoid discrimination and uphold “fair justice under the law” in this age of widespread genetic testing.

Genetic discernment is a breach of Article 14, which guarantees that everyone is treated fairly under the law.

The Supreme Court of India unanimously stated that the Right to Privacy is a Fundamental Right under Article 21 in Justice KS Puttaswamy (Retd.) & Anr. v. Union of India.

Since everyone’s genome is a private matter, genetic discrimination must be placed under the privacy umbrella.

The recent ruling of 2023, where the Supreme Court has ruled that children have the right to protect their genetic information from DNA tests, paves the way to form a concrete foundation for the debate on genetic privacy in India.

Way forward

Nearly every government outlaws genetic discrimination. The Genetic Information Non-discrimination Act (GINA), a federal law that shields persons against genetic discrimination in employment and health care, was approved in the United States in 2008.

Also, the Rights of privacy, autonomy, and identity are recognized under the United Nations Convention on the Rights of the Child.

• The Convention acknowledges the control that individuals, including children, have over their boundaries and how they define who they are about other people.
• Children are not to be deprived of this entitlement to influence and understand their sense of self simply by being children.

More thorough privacy laws and rules that are geared especially toward genetic information are required from a legal viewpoint.

Sanctions for improper access or use of genetic information are needed, including stronger guidelines for gaining informed permission for genetic testing and data exchange.

With improvements in encryption, safe storage, and data transfer protocols, there may be potential to improve privacy protections technologically.

From an ethical standpoint, it will be crucial to keep educating the public about the benefits and dangers of genetic testing and data sharing.

It may entail activities to provide fair access to genetic testing and benefits as well as efforts to support transparency, openness, and accountability around the collection, use, and sharing of genetic data.

-Article written by Swathi Satish