Protecting Genetic Privacy in the Age of Rapid Acceleration

Protecting Genetic Privacy in the Age of Rapid Acceleration

[This piece has been authored by Vardaan Vardhan, a student at University School of Law and Legal Studies, GGSIPU.]


We live in the age of accelerating technological advancement which means that the rate at which technology is advancing and growing is exponential. Understandably, the state’s capacity to properly assess the potential risk of technology is far outpaced by its development. This problem was best articulated by the late sociobiologist E.O Wilson in 2009 in a debate where he said “The real problem of humanity is the following: we have Paleolithic emotions, medieval institutions, and god-like technology”[1]. Genetics is one such area where there is an increasing and ever-evolving technological change which gives our paleolithic brains, god-like power. The same is evidenced by the fact that the cost of sequencing the genome from the 90s has come down at a rate,far outpacing the famous Moore’s law.  Estimates suggest that the cost of sequencing a genome got slashed from a billion dollars in the ’90s to less than 300 dollars in the present day .and it may come down even more. This rapid and unforeseeable improvement in genetics and biotechnology has given rise to many industries, businesses, and organizations. Such use could not have been thought of by society, like that of personalized medicine which uses genome and D.N.A sequencing to identify genetic predispositions to diseases and disorders, or of genealogy companies which use genetic technologies to determine the ancestry of customers and criminal justice systems across the world for investigations and identification of criminals. At the heart of all these activities is the collection of genetic data which as the word suggests is data relating to genetic characteristics that are both inherited and acquired (epigenetic changes) and the D.N.A (Deoxyribonucleic Acid). Genetic Data is the most sensitive data there is because it captures the entire existence of an individual.  D.N.A Phenotyping can be used to determine everything under the sun like personality characteristics, IQ, Skin color, Hair Color, Facial Structure, etc. What makes the data more vulnerable is that it does not stop at the level of the individual whose genetic data is being analyzed, but can also extend to the ancestors and progeny of the concerned individual. Therefore, robust and effective laws and policies are indispensable for the protection of genetic data.


The concerns that come along with the storage of genetic data have been taken note of by policymakers in the past all across the world with the earliest body of law being the International Declaration on Human Genetic Data which is a treaty on the protection of human genetic data adopted by UNESCO in October 2003. Subsequently, multiple jurisdictions have attempted to and have made laws for protecting and regulating genetic data. In India, genetic data protection saw the light of day in multiple bills, acts, and parliamentary recommendations at the end of the last decade. One of them is the notable but withdrawn Personal Data Protection Bill that was floated in 2019 and was modeled after the European GDPR (General Data Protection Rules). The ‘Digital India Act’ will supposedly come in its place and be modeled after GDPR and a couple of more international regulations. Under all these laws, non-consensual genetic data processing is to be done through the process of anonymization which is a data processing technique that removes or modifies personally identifiable information, and pseudonymization (a process by which personally identifiable information fields within a data record are to be replaced by one or more artificial identifiers, or pseudonyms.) However, these specific methods are unfit for the protection of genetic data. Advanced computers and software can easily visualize and image the genome sequence, the D.N.A, and its double helix. This can be done even if the genomic data is anonymized and pseudonymized. Through genetic visualization, computers and software can construct people’s faces and physical features and determine their characteristics on a computer thereby robbing them of their privacy and dignity. Therefore, the question then becomes whether D.N.A Phenotyping is to be regulated and if so, to what extent?


I believe D.N.A phenotyping should be regulated. Legal and constitutional grounds for regulation of this particular technology exist under Article 19(6) of the Constitution of India which allows the State to restrict any profession, occupation, trade, or business in the ‘interest of the general public’ and Section 69A of the IT Act which gives the government the power to block the usage of apps and access to information in the Cyberspace. The government even though on an ad-hoc basis used this power previously to do the same by blocking Chinese apps and software in September 2020  with privacy being one of the grounds. The government should make premeditated use of the same for regulating D.N.A Phenotyping effectively. Comprehensive guidelines and regulations that dictate the usage of facial reconstruction and genetic determination software and genetic data are recommended. The best example of it would be the Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Amendment Act, 2002. Predictive technologies similar to D.N.A Phenotyping like Ultrasonography and Amniocentesis were used by doctors and medical professionals to predict the sex of the baby for abortion, however, the government proactively acted on it by introducing the act. The act penalized the unethical usage proportionately leading to massive success in curbing Prenatal Genetic Testing and improving the sex ratio. D.N.A phenotyping can be used for similar purposes but the danger stemming from it in this context is much greater than ultrasonography. Based on the parent’s D.N.A, everything from the looks of the baby to its skin color, IQ, height, and sex can be determined instantly. So, if previously, babies were aborted based on sex, then one can foresee that with the availability of D.N.A phenotyping, abortion will happen on nearly all parameters and characteristics and not just on sex because it is undeniable that in almost all countries especially India, people face heavy discrimination based on characteristics like skin color, height, and physical disabilities. This is a path that absolutely no society should take because this practice would literally be indistinguishable from that of eugenics. A strict prohibition for prenatal phenotyping   similar to that of genetic sex determination would be required if society has to be stopped from treading this path. Apart from this very pernicious use of D.N.A Phenotyping, health insurance companies can also use genetic data for knowing genetic predispositions to diseases of their customers and deny them coverage or charge higher premiums and employers can use genetic data for biased and selective hiring, firing, and promotions of their employees. The Delhi High Court was also observant of this and ruled against genetic discrimination in a petition filed by United India Insurance Company Limited. The honorable high court in its judgment said 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.” The legislature should effectively codify the views of the Delhi High Court here. In my opinion, the best way to do this and eliminate all forms of genetic discrimination whether it is prenatal or in employment or insurance would be to bring a comprehensive law similar to the Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Amendment Act, 2002  which will penalize the misuse of D.N.A phenotyping and layout guidelines and compliances for the use of the technology. This would, to a large extent, eliminate all the perils that come with wide exposure of bioinformatics to society as evidenced by the successful use of legislation in curbing genetic sex testing and sex-based abortions.


Protection of genetic privacy against the government and state action is also very important as the surveillance capacity of state agencies is far greater than that of tech companies. For this purpose, India came out with the D.N.A Technology (Use and Application) Regulation Bill which was introduced in 2019. It is an Act for regulating the use of D.N.A technology by Law enforcement investigations. The bill to its credit penalizes the unethical disclosure of D.N.A and biological data proportionately and lays out appropriate guidelines for the protection of genetic information. The problem lies with the D.N.A regulatory board that is established by the Bill and is responsible for regulating the D.N.A databanks. The existence of civil society members on the board is not definite and certain because the selection committee consists wholly of central government bureaucrats and ministers. This is alarming as the role of the regulatory board is the most critical. Lack of civilian oversight for something as critical as genetic data and sole control and monitoring of the government can give way to a surveillance state which should be avoided at all costs if democracy is to survive.

While the U.S system is not perfect, it is more democratic and there are things that India can learn from it. The confirmation of commissioners of the U.S.A’s data regulator that is FTC needs the confirmation and approval of the Senate when nominated by the President. This ensures democratic accountability as members of the opposition are also vital for the appointment of key members of the Data regulator. In addition to this, the U.S as opposed to India also has multiple people for regulation in its authority (Commissioners) whereas India just has a single person (Chair). A body consisting of multiple individuals is more decentralized as compared to a body with a single individual who makes all decisions. Decentralized decision-making is more desirable for something as important and sensitive as genetic data privacy and data protection as it allows more scope for deliberation and discussion, and checks and balances when formulating policies.


Regulations are important, but they should be formulated in a manner that does not stifle the industry. Overregulation and privacy absolutism need to be avoided if the country wants to have a standing internationally in the technology-driven global economy. Biotechnology is a strategic sector in the international arena and India has a $70 Billion market which is expected to grow to $150 Billion by 2025. Bioinformatics which includes D.N.A phenotyping is a core domain of the same. Any regulatory logger-jam by the State can set India back in terms of biotechnological progress. A pertinent historical lesson for India would be its history before 1991 when the ‘license raj’  is said to have existed. It was an era of over-regulation that led to immense backwardness of the Economy and practically hamstrung innovation across all sectors. This is evidenced by the fact that India’s industrial production grew at a rate of 4 and 8 percent from 1947-1991 while its East Asian Counterparts like Vietnam and South Korea had similarly gotten independence from colonial rule around the mid-20th Century and grew above 10 percent. The economies are at a similar juncture right now and India is competing evenly with economies its size. The genomic revolution has just begun and only a liberal regulatory regime can ensure that India benefits from the revolution effectively like its counterparts. The policy position has been discussed extensively previously, to ensure efficiency on the technical front, the government should keep minimal licensing for D.N.A phenotyping and Genetic Data banks and preferably a single unified organization that deals with it so that potential players don’t have to run around offices for getting approval for which India is quite infamous. The government should take steps towards digitalizing the licensing process itself, as India is also notorious for its excruciating licensing and approval process. This could be done through several methods like the opening of an online portal for signing and submitting licenses, digital signing, and AI-driven automated approval processes which are particularly important as massive countries like India experience huge numbers of applications for all types of licenses. Negotiations and deliberations can be done through online conferencing too. Not only would  this save time for entrepreneurs and improve India’s rank in the ease of doing business Index, but also result in reducing corruption by limiting human interactions and increasing transparency in licensing for genomics. The amelioration of corruption in a data-sensitive industry would automatically translate to better data protection as well


The genomic revolution holds tremendous potential to revolutionize medicine and the criminal justice system. However, there are existential pitfalls too. Regulating D.N.A Phenotyping and protecting genetic data with robust, sound and vigilant policies are key to mitigating them and making sure that benefits of it are enjoyed by citizens. 


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