By Sangita Sharma & Sayan Chandra
Introduction
Genetic Discrimination has acquired the platform for techno-social discussion for quite sometime now especially with the advent of life insurance companies excluding patients from their policy based on their genetic pre-disposition to any particular health condition. Such an act hits the basic tenet of rights of equal treatment and protection ensured by Article 14 of the Constitution as well as the UDHR globally.
Genetic Discrimination is classically defined as discriminatory practices based on the genetic makeup of an individual, because of his/her health condition, habits, racial genetic history or such other community based information that can be derived from the gene. But such a discrimination is not that distinct but rather linked to the broad social and racial discriminatory practices that already exist. The recent Canadian Judgment on the Genetic Non-Discrimination Act of Quebec has reopened the discussion on the penalization of any act of discrimination, based on the genetics of a person and has galvanized the arguments in its favor.
Explaining the Indian Scenario
The apex court in India has specified in clear words that any act of genetic discrimination, specifically by insurance companies, violates the basic tenets of Right to Equality under Article 14 and the Right to Health and healthcare guaranteed under article 21. This has been the argument used by most of nations, whereby any such act of discrimination entails penalty and damages whether done by the state, individual or a corporate body. This fact can be proven from the detailed analysis of various aspects involved and dimensions analyzed in the case of United India Insurance Co. v. Jay Prakash Tayal. Additionally, this discrimination is recognized as a violation of such a fundamental right which is not only actionable against the state but also against other non-state actors. But the Puttuswamy judgment denied the concept of direct horizontal application of privacy right and hence there is a requirement of parliamentary law to protect the privacy of an individual against the Non-State Actors.
Also, there are existing legal frameworks which protect genetic information, or rather biometric information, which only includes the DNA of an individual and no other genetic material. The Rules while defining the biometric information of an individual, leaves other genetic materials like mRNA and such other RNA particles which in turn have proven to be sources of information too especially with the advent of complementary DNA libraries and advanced sequencing techniques. But the IT Rules on Sensitive Personal Information prevents the collection and disclosure of the genetic information, instead of prohibiting the use of this information in a discriminatory manner. This is the exact difference of approach which has been pointed out in the Dissenting Opinion of the Canadian Judgment thereby highlighting the fact that any law prohibiting genetic discrimination should clearly state the purpose of doing so.
The only judgement explicitly prohibiting genetic discrimination in India is United India Insurance Co. v. Jay Prakash. However, a comprehensive analysis of the judgment reveals that it is self-defeating in nature, on one side it is stating that it is unconstitutional to discriminate against such clients but is also allowing companies to ask for higher premiums or deny claim if a genetic disorder has been established by appropriate medical testing.
Apart from this judgment there are no cases available related to genetic discrimination be it in the field of health insurance or employment or sports. This poorly thought out and solitary judgment in the present scenario, compounded by the lack of pertinent rules and regulations, illustrate the dire need to have a Genetic Discrimination act in India.
Therefore, in such a scenario, it is especially required to advance the argumentation of framing such an act as pari-materia to racial and caste-based discrimination as a punishable criminal offense to create the required deterrence to maintain the privacy, human dignity and bodily autonomy of an individual.
Viability of criminalizing genetic discrimination
The classical debate as to what can be called a crime, has been a socio-legal debate which has been fought across various tables with no specific conclusion or standardization. The sociological and utilitarian approach has been to define any act as criminal, if it disturbs the social fabric or the social contract which binds the society and hence requires to be formally shunned in order to create the necessary deterrence and reform (Cesare Beccaria, On Crimes and Punishments (1st ed., 1764)). These approaches have been widely observed by various nations and specially the IPC for India, which punishes even socially immoral activities.
Further, the Canadian Court has conceptualized with respect to genetic discrimination as follows:
“A valid criminal law has three essential elements: a prohibition, a penalty related to that prohibition, and a valid criminal law purpose. The first two elements are formal requirements while the third is substantive.”
There are three criteria that must be fulfilled in order to determine whether an act can be criminalized or not. Firstly, it must be related to public purposes such as peace, security, health etc. Secondly, there must be a well-defined threat that has to be prevented by the act and thirdly, the threat must be real.
Public Purpose
It is needless to reiterate that the genetic makeup is extremely sensitive and private, which an individual wants to protect from arbitrary use by States and companies, which falls within the very scope of Right to Privacy guaranteed under Article 21. Also, it can affect the right to good health care facilities when insurance companies deny assistance based on such genetic makeup and related conclusions about a disease. This is complemented with the fear of the information being leaked, as the one the same happens, the IT Rules 2011 does not protect such information. This can prevent them from getting treated for some preventable disease or even face social, racial discrimination, specially even when the genetic makeup in a mitochondrial DNA of an individual can trace its ancestry, as seen with the cases of discrimination due to use of websites like 23andMe in USA.
Moreover, genetic testing has its benefits. Many genetic diseases can be treated if they are diagnosed early such as sickle cell disease, familial breast cancer etc. However, due to the fear of this information being exposed to a third party, many people opt to not go for the test, which is extremely regrettable.
It is thus, the state’s duty to protect one’s identity and the information which is uniquely vulnerable to use. It is also obvious that since discrimination in its basic form is based on the features of an individual, whether physical or ethnic, there’s an undeniable genetic component to it. Thus, if the act becomes a criminal law, it will protect several public interests such as peace, security, dignity, autonomy, privacy, equality, public health etc which are presently at stake or put on hold because of merely classifying this offence as civil
Prevention of any threat
The potential abuse of information from genetic test results, may cause threats to one’s equality. For instance, most of the countries like USA, Canada, Australia, UK, etc have recognized genetic discrimination with respect to health insurance and a few, with respect to employment. However, there is huge scope for genetic discrimination as far as other professions are concerned and that can prove to be fatal for the thread of society. Genetics and hard work are both factors which contribute to the success of an individual in any field, but given this age of cut throat competition, it is inevitable that genetic discrimination will become a stark reality. For two individuals with similar performance records, revealing their genetic data may provide an unfair advantage to one of them. Some fields where this might become very prevalent are sports, education, military etc.
An instance can be found in a discrimination against a boy in Palo Alto, California, who was positively discriminated against to have the CFTR genes for cystic fibrosis (though the boy didn’t actually have the disease), but the same could not be penalized because such instances were not covered under the Genetic Information Non-Discrimination Act of USA.
In India this can be related to the fact that many a times genetic discrimination indirectly leads to social or racial or caste based discrimination based on information obtained in a genetic test. Though such an act can be punished under existing acts on prevention of caste and racial discrimination, but an act penalizing genetic discrimination would have a broader scope of application to cover instances as described above.
The Threat Being Real
The genetic information is integral to one’s identity and its disclosure to a third party will obstruct one’s autonomy. The ability of not being able to safeguard one’s own information will clearly hamper the sense of dignity and violate the privacy of individuals.
We need not look further back than the 20th century itself, to observe the tremendous harm that genetic discrimination can bring about. Experiments in eugenics have presented us with inhuman situations; an extreme example of the dangers of glorifying eugenics and putting it into practice can be seen from the results of their implementation by the Nazi regime in Germany led by Adolf Hitler. Currently India has no specific guidelines to govern genetic testing by companies, therefore they can sell this data to pharmaceutical company as done by 23andMe in US without giving acknowledgement to the customer or may sell these to third parties which can lead to discrimination based on genetic profiles. Given this issue is not unique and has already been faced by countries like US, it is not an unreasonable proposition to think that this might be a serious issue in India too, in the coming decades. Therefore, it is necessary to exercise our foresight and take the necessary legislative steps, in order to circumvent this problem even before it gains a foothold in the Indian context. Discrimination based on genetic makeup, no matter how minor, can set precedents which threaten the peace, security, dignity, privacy and health of the individuals in a society.
Congruence with Indian Penal Laws
Having carved out a case in favor of criminalizing such a discrimination, one needs to look into the IPC, as to whether such criminalization would be congruent to the basic tenets of the IPC, 1860. The only provision in IPC which borders on prevention of such discrimination is s. 153A, which penalizes any act of promoting violence or hatred based on discriminatory grounds. The section of 153A is however broad enough by the usage of the words “any grounds whatsoever”. Therefore, any discrimination based on genetic traits can be covered under the section too. But the section does not prohibit the act which is being sought to be penalised here. It criminalises such discrimination only when the act causes “disharmony or feelings of enmity, hatred or ill-will” in the society. Hence, it is the consequence of genetic discrimination that is penalised and not the act of discrimination itself. Hence, it fails to prohibit discrimination in the manner done by say the SC/ST Prevention of Atrocities Act, 1989 in specific sections 4-6 and 8 of the act. The section 3 of the Act defines the atrocities on SC/STs which are penalised, which also includes even acts of intentional insult or any such act which reflects discriminatory practice. Similarly, even genetic traits are used to discriminate based on health conditions or lineage or their ancestral racial recognition thereby striking at the very basic dignity of an individual which is guaranteed by the Constitution of this nation. Hence, although one may not find criminalisation of genetic discrimination as congruent with the existing sections of the IPC but that in turn calls for reformed changes in the criminal code of the nation.
Conclusion
It is the opinion of the authors, that it is the need of the hour to introduce the act prohibiting genetic discrimination. This is even more important with the advent of apps like 23andMe and also the use of genetic tools for identification of criminals, using placeholder names (like the John and Jane Does) , thereby leading to possibilities of the creation of a public database and unauthorized dissemination of genetic information of the public. In the Indian context, it is even more relevant now due to the improvements in the field of medical sciences and genetic testing, which has allowed for more people than ever to get genetically tested. It is also much simpler than ever for an online database to exist, which contains the genetic information of people. This all the more necessitates the importance of introducing an Act as soon as possible, since its essence would be especially felt with the protection of the privacy of the masses regarding their genetic makeup, in the coming future.
[The authors are law student at Gujarat National Law University.]