Right Of Genetic Privacy

To understand the concept and seriousness of Genetic privacy we first have to understand the concept of DNA, Genetic Data and privacy. Genetic Data is a genus of personal Data relating to inherited or acquired genetic characteristics of a natural person procured through DNA or RNA analysis or from any other element which enable us to procure such identical information. Now to understand DNA we have get into some brief scientific details. DNA is the hereditary material in humans and almost all other organisms.2 Nearly every cell in body has identical DNA which is also identical to his ancestor be it his paternal or maternal side. Most of the DNA is found in the cell nucleus (where it is called Nuclear DNA). But a small amount of DNA is also found in Mitochondria. The information stored in DNA is stored as a code made up of four chemical bases namely (a) adenine (b) guanine (c) cytosine and (d) thymine. Human DNA contains more than 3 billon bases and more than 99 % of those bases are same in all people; the order, sequence, chain and pattern in which these bases are arranged within the cells determines and consists of the information for nourishment and sustainability an organism, similar to the way in which letter of the alphabet appear in a certain order and pattern to form words and sentences. The right to privacy is a natural right to which every human is entitled by its own virtue. Additionally, The Universal Declaration of Human Rights by Article 12 protects an individual’s privacy against intervention by another individual or by the state. Article 12 of the UDHR states that “No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honor and reputation. Everyone has the right to the protection of the law against such interference or attacks.” Additionally, the Indian Constitution by its Article 21 has given the right to privacy the status of a fundamental right. In R. Rajagopal V. State of T.N3 , a.k.a, “Auto-Shankar case” the supreme court expressly held that the “Right to privacy” or the right to be let alone is guaranteed by Article 21 of the Constitution. A citizen has the right to safeguard the privacy of his own, his family, marriage, procreation, motherhood, childbearing, and education among other matters. None can publish anything regarding the above matters without his/her consent whether truthful or otherwise and whether laudatory or critical. If he does so, he shall be held liable for violating the fundamental right of the person concerned in an action for damages.

Right to Genetic Privacy

The fundamental postulate of the right to genetic privacy is that an individual’s genetic information is intrinsic to each individual and cannot be introduced in public domain without the consent of the individual in question4 . The ability of genetic information to provide both identification and sensitive information related to health and other predisposition has led to a lively debate about appropriate privacy protections. Proponents of “genetic exceptionalism” claim that genetic information deserves explicit and stricter protection under the law5 . In India, as of now, there is no comprehensive legislation to protect the genetic data of an individual. The Right to privacy is not explicitly mentioned in the Constitution of India and hence only judicial pronouncements of the Supreme Court and High Courts of India provide a basic source for both the purpose and content of the right to privacy. 

Benefits of Genetic Data

The voluminous and wide-ranging research in the field of genetic science has led to many breakthroughs in the vicinity of medical science, hereditary diseases like cystic fibrosis and hemophilia which were previously was considered to be untreatable are possible to be cured and prevented by genetic engineering. Today in all, we have 26,000 genetic tests available for 5,400 conditions, according to the National Institutes of Health Genetic Testing Registry6 . This wide range of testing can help in detecting and preventing various kinds of disease before it has ever happened. These researches have also revolutionized the criminal justice system and helped investigative agencies such as the police, CBI, etc. to solve a number closed and clueless cases. The genetic information procured at the crime scene or from the victim’s body are considered to be evidence which helps in identifying the culprit among millions of individuals. For example, in rape cases the DNA evidence found on the body of the victim like semen is considered to be a conclusive proof of the guilt of the accused. In the year 2018, a man named Joseph James DeAngelo Jr. a.k.a, “the golden state killer” was arrested, an infamous alleged serial killer who murdered 13 people in the 1970s and 80s. The arrest was made possible after such a long duration by matching the DNA samples found on the crime scenes. The police compared the DNA sample found on the crime scene to an online public DNA database to find the family tree of the killer7 . Thus, we observe that the advancement in the field of genetic information has proved to be very useful. 

Demerits of Genetic Data

As Dr. William Thompson, an attorney and criminology professor at the University of California as once stated in an interview that “The DNA sequencing technology is accepted by the public as a silver bullet, where I happened to believe that it isn’t8 .” With its various merits there also comes demerit along with it. The chief drawback of the availability of genetic information is the fact it endangers the privacy of an individual and the possibility of genetic discrimination. Once an Israeli- American Scientist, namely Yaniv Erlich, who is an Associate professor of computer science at Columbia University and Chief Science Officer at MyHeritage who works combines Computer Science and genome9 . Further, he also works with different organizations to ensure their security and check weather their security measures are up to the mark or not so that no one can hack into the system and steal valuable data from them, with a zeal to know how secure these Genetic Banks are started investigating and made an attempt to trace the individuals from their genetic data. Not too much surprise, he and his team were able to trace several individuals through their genetic data10. This proves that how easy it is to know the person’s name, phone number, age from the genetic information and what a considerable threat it is posing towards privacy of an individual. We all leave behind our DNA every time and everywhere without even realizing it. For example, while combing our hair, brushing our teeth, giving blood during medical check-ups, etc. we leave behind billons of materials containing our DNA. These DNA we shed on daily basis can be detectable if appropriate sensors are installed at our offices, in malls, airports, stores we visit, etc. If this happens on any day in the current or future world, we would be trackable in ways in ways the mobile phone could never. Moreover, if some DNA material is collected and planted on a crime scene, such person would be the prime suspect of the crime and may be held responsible also for such crime.

Genetic Discrimination

Genetic Discrimination is the unfair treatment of an individual based on real or perceived genetic conditions, genetic pre-dispositions, genetic risk factors related to health and disease traits or ancestry11. In other words, genetic discrimination occurs when a person is treated differently or is denied something over which he has full right because of his genetic orientation or predisposition to a disease, which he/she doesn’t have and, in most probability, will never have. It has been seen in many cases that the employer deny job to a person because he has a certain genetic mutation by which they are exposed to a certain disease. Similarly, some classes of persons are also denied health insurance because they are exposed to a certain disease due to their genetic orientation. In the US, these sort of cases of genetic discrimination were increasing drastically in the recent past. Some of these heinous atrocities are also well-documented. For example, In the 1970s, some states began to mandate sickle cell anemia screening for African Americans. However, the difference between carrying a sickle cell trait and having a sickle cell disease was still unknown. Thus, healthy carriers of the sickle cell trait suffered adverse employment actions and ultimately a stigma was developed against the African-American12.

In another case, Equal Employment Opportunity Commission, in 2001, filed a complaint against the Burlington Northern Santa Fe for testing its employees who developed Carpal tunnel syndrome for a rare genetic condition that is normal for the syndrome. Employees were examined by the company’s physician without any information of the true reason behind the testing and those employees who refused to get tested were threatened with termination13 . Several cases of health insurance discrimination were also recorded during this is time. For example, two children wo were carriers of a genetic mutation that caused alpha-1 antitrypsin deficiency were denied coverage by their mother’s health insurance company although they would have never developed that disease14. A young boy who was a carrier of mutation for Long QT Syndrome was denied coverage under his father’s health insurance policy due to his pre-existing condition, even though his condition was not manifest15 . Studies on genetic discrimination and life insurance by country. The above graph depicts the number of genetic discrimination cases found in life insurance in different country during a period 2006 and 200716 . Thus, we notice that in the past few decades there has been a massive increase in the cases of genetic discrimination and will continue to do so if a strict law is not passed for the control and prevention of genetic discrimination.

Status of Genetic Privacy

As Law Geneticist and Experts on genome science might differ on the question that weather this radical transformation in the field of genetics is productive or disruptive for the human race but all of them agree on the statement that Genetic information is highly sensitive to every individual and they need extremely vigilant supervision and protection so that they are out of reach of the trespassers and no one can use them for one’s own benefit.

In the year 2008, the US saw the introduction of a new Law known as the Genetic Nondiscrimination Act of 2008, commonly known as GINA,200817 which came into force on 21st May, 2008. The Act was designed to prohibit the use of genetic information by the health insurance companies to deny health insurance or to charge higher premium from any person solely based on a genetic predisposition to developing the disease in the future. The legislation also forbids employers from using genetic information of an individual while hiring, firing, job placement, or promotion decisions, a classic example of which was the Burlington Northern Santa Fe case of 200118 . In India as of now there is no concrete Act or statute to prohibit genetic discrimination. The Supreme court of India is the only source of the right against genetic discrimination. The only judgment explicitly prohibiting genetic discrimination in India is United India Insurance v. Jay Prakash Tayal19. In the above case the Delhi High Court stated that, “Discrimination in health insurance against individuals based on their genetic disposition or genetic heritage, in the absence of appropriate genetic testing and laying down of intelligible differentia, is unconstitutional”, however, a comprehensive analysis of the judgment reveals that it is self-defeating in nature, as on one side it is stating that it is unconstitutional to discriminate against such clients but it is also allowing companies to ask for higher premiums or deny claims if a genetic disorder has been established by appropriate medical testing. Apart from this there are no cases available related to genetic discrimination be it in the field of health insurance or employment or sports.