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Genetic Privacy In India And Its Present Status

Over the years, genetic tests have become more popular and affordable. For a few thousand rupees, basic predictive genetic tests can now be ordered online. According to the National Institutes of Health Genetic Testing Registry, we now have 26,000 genetic tests available for 5,400 conditions. Our genomes are similar to a horoscope in that, if correctly interpreted, they will disclose hidden secrets about diseases we are likely to develop in the future.

As prices continue to fall, a slew of DNA sample testing laboratories and collection centres have sprouted across the world, all willing to genetically test people at reasonable rates. In India, there is no clear law governing genetic testing laboratories. They must meet the same set of standards as a medical laboratory that performs blood glucose tests. As a result, it is important that the government take action to control 'Genetic Testing' in the country

Genetic Data and Privacy

Genetic data privacy is a term that seeks to prevent a third party or anyone else from using a person's genetic data without his permission. Science and technology advancements have made it simple to obtain DNA samples from people and extract personal information from those samples. However, these advances are in violation of a person's right to privacy.
Modern genetic research can play an important role in the future, but it can also be misapplied, resulting in alarming outcomes. Since a person's genes are the blueprint of his or her physical or biological being, genetic data privacy is critical.

If anyone has access to a person's gene sequence, he will learn about his personal life. He, too, has access to information about his future. When a person's genetic data is used, whether for testing, medical purposes, or some other purpose, his privacy should be protected.

We are conscious that every time we comb our hair, brush our teeth, give blood during a medical check-up, and so on, we leave our DNA behind. If sensors are mounted in our office, malls, airports, and shops we visit, the billions of DNA samples we shed on a daily basis can be detected. This will allow us to be tracked in ways that a cell phone could never do. Consider the ramifications if exuviated DNA can be retrieved, repeated, and sequenced at will. Our DNAs will reveal stories about our predisposition to alcoholism, depression, aggressiveness, sexual orientation, Alzheimer's, Parkinson's, bipolar disorder, and even crime that we may not want anyone to hear.

As newer techniques and less costly methods for sequencing whole genomes and compiling family history in databases emerge and becoming more widely used, we are entering an era of expanded genetic research. There's a chance that this knowledge will be used against us. It is important that we become aware of the dangers that genetic discrimination poses.

For example, based on the profile available in the domain, it would now be possible to fabricate genetic evidence in any crime without even getting a sample from a real individual. This suggests that engineered DNA samples of innocent people might be planted at a crime scene, and forensic laboratories wouldn't be able to tell the difference between a planted sample and a real innocent person's sample. Despite its status as the gold standard of proof, someone with a vendetta may use fake DNA to frame anyone.

It's also relatively simple to sequence some DNA today in order to perpetuate discrimination. Why would a business recruit someone with a genetic predisposition to cancer, alcoholism, cognitive impairment, and other diseases? Several genetic clinics will happily accept toothpicks, hair combs, cigarette butts, chewing gum, licked-stamps, and other samples and sequence the DNA on them for legal, medical, gender, or paternity purposes. This is, of course, perfectly legitimate today. If an employer is unsure on whether or not to recruit the candidate who came in for the interview, what does he do? He should send the teacup from which the candidate drank his tea to the lab to find out about his health and mental proclivity, saving his company a tonne of money on medical benefits.

At the moment, health insurance providers base their premiums primarily on family medical records. Most of them would be unemployed or uninsurable if employers and insurance providers demanded genetic testing. The cost of health insurance can only rise as more genetic testing data becomes available. As a result, any prejudice based on genetic information should be avoided.

Advantages and disadvantages of genetic information:

  1. The following are some of the benefits that a person may derive from his or her genetic information
  2. Genetic information may disclose information about a disease, illness, or a person's health status.
  3. It can make a person more aware of his or her own health.
  4. A person can learn about his ancestors and distant relatives.
  5. One's personal data can be used in medical research.
  6. If a person learns about his illness early on, he would be able to take more preventative steps to treat it.

Genetic Information also has the following drawbacks:

  1. Genetic data is made up of a person's DNA and chromosomes. And if anyone has access to them, he will discover everything about a person's personal life.
  2. In general, people use their genetic information to assess their health status, and they do so using direct-to-consumer genetic tests (DTC), which are not always reliable.
  3. This information provides unexpected information about a person's health, family members, and other private information to a third party, which can be harmful. If the genetic data gets stolen or someone gets the unauthorised access over it then it is likely to affect the privacy of an individual.
  4. Genetic knowledge tests aren't entirely accurate. And it is on the basis of these findings that people make life decisions. Personal knowledge about an individual's current, history, and future is included in genetic data. And if such information is revealed, it can have a negative impact on their lives, such as unwelcome responses from employers, insurance providers, the government, and others.

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 discrimination 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. With the aforementioned judgement, the Delhi High Court has set the ball rolling; now it is up to the legislature to uphold the promise against genetic discrimination by enacting a rule.

Genetic discrimination is illegal in almost all countries. In 2008, the United States passed the Genetic Information Non-discrimination Act (GINA), a federal law that protects people from genetic discrimination in health care and jobs. A woman in the United States was denied life insurance due to a risk-inducing BRCA1 variant. GINA has a number of drawbacks. It excludes education, mortgage lending, and housing. It also excludes other types of insurance such as life, long-term care, and disability. A collection of guidelines on the use of genetic knowledge for insurance purposes has been adopted by the Council of Europe.

It is also illegal for insurers or employers to request DNA testing or findings under Canada's new "Genetic Non-discrimination Act." According to news, insurers in the United Kingdom are currently subject to a voluntary moratorium until 2019, which was decided upon by the Association of British Insurers and the government. India cannot afford to fall behind in the face of these circumstances; we must enforce our own law by borrowing the best features from around the world.

It's amazing how a small sample of our DNA can disclose so much important and personal knowledge about us. Genetic data can be used in a variety of areas, including health and medicine, science, and legal proceedings, but these applications pose a significant challenge to an individual's privacy. When genetic research advances, genetic testing can now be performed on small tissues in our bodies. This has heightened the urgency of the situation. It can be abused by insurance providers, employers, and other third parties. Genetic information is distinct from the other forms of personal data. As a consequence, it needs special attention.

To safeguard genetic privacy, new laws are being developed to govern direct-to-consumer research. However, before signing up, the user should read the company's privacy policy to avoid potential problems. And, if the company breaches its own policies, the relevant legislation will be used to bring the company to court. If a person chooses direct-to-consumer testing, he should choose well-known companies because smaller companies do not have a comprehensive privacy policy. Similarly, when taking a genetic test at any clinic, one should exercise caution and read the clinic's privacy policy carefully. Since genetic data contains highly sensitive information about a person, appropriate safeguards must be taken to ensure genetic privacy.

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