The Blurred Strands of DNA Technology in India

Written by Krishna P Unny and Nidhi Upadhyaya

Deoxyribonucleic Acid (DNA) profiling dates back to 1984 when one Sir Alec Jeffreys discovered that individuals could be differentiated on the basis of their DNA. Shortly after, DNA profiling was used for investigations in criminal cases, specifically rapes and murders in the UK. In the present day, most countries across the world use forensic data — for academic research purposes, to ensure speedy prosecution in criminal cases, and for the advancement of healthcare provisions. DNA databases are maintained at a national level in a lot of developing and developed countries, and prove instrumental in aiding police investigations to pinpoint on repeat offenders. It can also help combat rare diseases that pose a threat to entire or certain ethnic and diverse communities, given their predisposition to specific conditions. As information and data is increasingly becoming the new currency, various countries have adopted regulatory measures of varying levels of stringency to protect and extend the use of their databases. Subsequently, as DNA analysis technology advances, smaller and smaller quantities of DNA extractions are made possible, leading to a better and closer understanding of DNA behaviours. Not only is this of paramount significance, but it brings some concerns around protection and possession of this information. In the light of this phenomenon, we propose to explore the current scenario of DNA profiling and Technology in India, the provisions and proposed laws that govern it, its implications and feasibility in the light of both global and local events.

The DNA Technology (Use and Application) Regulation Bill, 2019

A bill on DNA profiling in India was first introduced a little over 17 years ago by the then Bharatiya Janata Party (BJP) government headed by Atal Bihari Vajpayee. The DNA Technology (Use and Application) Regulation Bill, 2019 is the current effort by the Indian government to “provide for the regulation of use and application of Deoxyribonucleic Acid (DNA) technology in order to establish the identity of certain categories of persons including the victims, offenders, suspects, undertrials, missing persons and unknown deceased persons” (The DNA Technology (Use and Application) Regulation Bill 2019, 4). While both public and private forensic labs conduct genome sequencing and maintain DNA profiles, the Bill proposes a chain of custody by establishing DNA data banks at a regional and national level. These DNA labs are required to share their database with the data banks, where they are categorised as indices — Crime Scene index, Offender’s index, Suspect’s index, Missing Persons Index, and unknown Missing Person’s Index. Apart from the promise of delivering speedy justice by maintaining records of repeat offenders, it also regulates issues pertaining to human identification: medical and civil disputes.

The Bill provides the nuts and bolts of legality, which were previously not in place to enforce a strict code of ethics in matters relating to criminal offences. It provides clauses on consent, storage, and removal of the DNA profiling exercise on the same criminal matters, however, the same is uncertain and ambiguous for cases of medical and civil disputes. It seeks to establish identity using DNA technology, the process of which can be used for a host of purposes given that it reveals a lot of information pertaining to an individual’s physical and medical traits such as susceptibility to diseases, history of illnesses, instances of mutations, skin colour, behaviours, to name a few. While countries like the USA with the Combined DNA Index System (CODIS), and the UK with the National Criminal Intelligence DNA Database explicitly mention the placement of databases for criminal investigations, India with this bill fails to do so.

The bill is currently under examination with the Parliamentary Standing Committee on Science and Technology, as it has invited a lot of debate on the lack of clarity pertaining to the absence of an interwoven view of the provision made on Data Privacy and Data Protection. Storage of personal data collected for civil disputes is a direct infringement to the fundamental right of Right to Privacy. Chronologically speaking, the privacy as a fundamental right was passed in 2017 (Puttaswamy Vs Union of India case), whereas the DNA Bill has been on the cards for much longer, and The Personal Data Protection Bill is still in its draft stage, deeming lawmakers and politicians unfit to handle the threat to privacy posed by the bill.

Concerns on Privacy

One of the prime concerns on the topic of privacy is the unification of the database. DNA samples, if used to settle civil disputes have no guarantee of being destroyed, irrespective of the index it belongs to. This puts an additional burden on an innocent bystander, should they be present at a future crime scene. In such a scenario, the consent and due process is left unanswered and not accounted for due to the lack of clarity in the bill. Not only in consent a grey area in the context of civic disputes, but it is also debatable in criminal matters — the second and third categories pertain to arrests of those convicted with punishable offences with less than 7 years of the sentence, and collection of samples of minor/disabled victims. The procedure requires a written consent from the individuals, which can be foregone with approval from the district magistrate, which in technical terms is coerced consent. Had the Personal Data Protection Bill been duly approved and incorporated, its provision for processing sensitive data on the lines of ‘informed, free, specific, clear, and capable of being withdrawn’ (The Personal Data Protection Bill 2019, clause 2 and 3, 7) would be of some relief.

Additionally, cross-referencing of the data collected is in contravention to the “sensitive personal data’’ section of the Personal Data Protection Bill that specifically covers requirements of consent and dissemination of information of genetic data. There are also no regulations on the prohibition of usage of DNA data by third party users, which is a cause for concern on privacy, given that a lot of independent and private labs are authorised to conduct DNA tests in India. There is a penalty of up to Rs 2,00,000 and 3 years of jail for leaking information, however, no other method of invasion of privacy is penalised, due to the lack of integration with the data privacy and protection laws — both the Srikrishna Committee draft bill on Data Protection, and Digital Information Security in Healthcare Act (DISHA) of 2017.

An Overview of Genomic Data Banks

Genome sequencing is the deconstruction of the whole DNA of a human cell and is primarily carried out to understand the functions, behaviours, and patterns of genes. It is most importantly used to understand genetic mutations that explain diseases and predisposition to diseases of an individual as well as an entire population. India houses the world’s second-largest population that represents diverse ethnicities and genetic compositions, however, we lag behind in global genome studies. To facilitate better understanding and provision of healthcare, countries such as Australia, Dubai, Estonia, Turkey, US, UK, Japan, etc have launched biobanks containing information about more than 100 thousand citizens. The biobanks are linked to national registries and hospital databases.

The Council of Scientific and Industrial Research (CSIR) in India launched the IndiGen Project in 2019 to undertake whole genome sequencing of 1000 individuals and aims at completing the activity on 10,000 individuals in the next 3 years. Like other countries, it aims to improve diagnostics and design early interventions among children of specific age communities to combat genetic diseases. Apart from the project, private labs that offer genetic testing also store this data. As an added advantage, genomic databases prove beneficial in forensic identification. However, with the proposed bill, the fear of cross-usage of databases by the government and private players raises alarms on consent, data privacy, as well as sensitization towards information usage among citizens.

Usage of genetic information by third parties such as insurance companies and employers have sparked off debates in the US and UK, given the possibility of usage of this information not just for medical purposes, but also politically charged racial/community profiling. From a health-insurance standpoint, insurers in the US were prohibited from denying coverage or increasing premiums (Parthasarathy 337). Through advocacy, privacy of “individually identifiable health information” has been guaranteed with the addition of the clause — “The new standards: limit the non-consensual use and release of private health information; give patients new rights to access their medical records and to know who else has accessed them; restrict most disclosure of health information to the minimum needed for the intended purpose; establish

new criminal and civil sanctions for improper use or disclosure; and establish new requirements for access to records by researchers and others” (U.S Department of Health and Human Services qtd in Parthasarathy, 340). In the UK, however, a more cooperative approach was adopted since evidence collected did not support the need for the absolute right to privacy for possessing knowledge about genetic test results by insurers (Parthasarathy 344). The viewpoint is based on the commercial nature of health insurance which pre-supposes consent and optional purchase between two parties.

When contextualized in the Indian landscape, possession of digital health data, both in the form of insurance and normal lab reports, immunizations, medications, etc, are governed under Digital Information Security in Healthcare Act (DISHA) of 2017. While the law prohibits insurance providers from using or transferring this data, the jury is still out on the extent to which they will be penalized. While industry players argue for a level playing field brought about by diluting the provisions of this Act, it puts minorities at risk given that a vast majority of them are either unaware about conversations around data protection and privacy, or are heavily reliant on government schemes that are dictated by unclear provisions of laws and regulations. At the intersection of the DISHA Act and the DNA Technology Bill lies the fear of uncertainty of what data collected and stored in the regional and national data banks will be used for.

Polymers, Politics and Polemics

In 2019, The New York Times reported that on Stormfront — an online hate forum dedicated to “white pride” — it had become a common “rite of passage” for its members to share their DNA details proving their white ancestry upon entry (Murphy, “How White Nationalists See What They Want to See in DNA Tests.”). The Genetic Ancestry Test (GAT) then became a tool in the hands of the white nationalists for racial profiling. Meanwhile, China is building its own nationwide DNA database which it claims is for efficiently fighting crimes. Human Rights groups claim that the move, like many others, primarily targets the Uighurs whom it can then easily chase down using the information provided by the database (Wee, “China Uses DNA to Track Its People” ). In a study by Gottweis and Kim on South Korean Identity politics and bio nationalism, it is argued that in South Korea, nationalist debates have shifted from treating “blood” as markers of ethnicity to more “biologically and scientifically grounded” markers like DNA (501). The concept of ethnic and racial profiling using data from DNA tests, however, is not novel. In her essay titled Virtual Geographies of Belonging, Susanne Bauer states that in Russia, “geno-geographic techniques” were used by the government to “mobilize post-Soviet nation-building,” marking the “Russianness” of some of its population as superior to the Asian “others” (528).

In India, the BJP, identified as the right-wing Hindu nationalist ruling party, has not overlooked the significance of genetic data in exercising its nationalist agenda either. Some of the long-standing debates surrounding DNA studies in the country have been surrounding the Aryan Migration Theory and the identity of the population of the Indus Valley. While recent studies of ancient DNA provide empirical evidence to support the theory that it was a mass-migration that forged the population in the subcontinent, right-wing politicians, as well as historians, have claimed that the population was in fact indigenous and the “same as the Vedic people’’ and spoke Sanskrit. Today’s Hindu population, they claim, are direct descendants of the first inhabitants of the subcontinent (Daniyal, “Two New Genetic Studies Upheld Indo-Aryan Migration”). Claiming a genogeographic lineage that traces back to one of the earliest civilizations in the world and in the subcontinent helps establish the primacy of the Hindu population as the true citizens of the land; not only by jus soli or right of soil but also jus sanguinis, right of blood (Daniyal, “Blood Nationalism”). As Bauer mentions in the case of post-Soviet Russia, so in India, “the categories of ethnicity and language are actively merged with specific local bio historical grids of belonging (528).”

Bauer’s anxieties regarding the usage of genetic information to meet nationalistic ends holds true in the Indian context as well. A prominent political leader from the ruling party was recently heard claiming earlier this year that DNAs of Indian Muslims would clearly indicate that they were primarily Hindu (Swamy, “Muslims have the same DNA as Hindus”). The introduction of the Citizenship Amendment Act along with the National Register of Citizens have only heightened fears among the marginalized communities of the ruling party using national government policies to further push them to the fringes. The NRC, for instance, has already commenced taxonomically segmenting the population as “doubtful citizens’’ and also initiating the ones deemed “illegal immigrants’’ into displacement camps. The recent arrests of CAA-NRC protesters by the state and the regime’s reaction to the Delhi pogrom also bare the government’s rising suspicion on and increased rates of conviction of members from the Muslim, SC/ST and Dalit communities. Such moves put forth the intentions of the regime with regards to its treatment of anyone outside of the majority caste Hindu population and further deepens the fears of the exceedingly sensitive DNA data being misused by the authorities to further marginalize certain castes and communities.

The Bill, with its ambiguity regarding the regulations on data collection for civic matters, makes it prone to caste and community-based profiling. Not only does it not mention the scope of and regulations for Genetic Ancestry Tests being conducted in the country, it also has a dearth of clauses when it comes to specifying which parts of the DNA will be used to ascertain an individual’s identity. The human genome stores copious amounts of data about each person. Parts of the DNA not only help unravel information about the person on whom the test is performed but their filial relations as well.

According to the National Crime Records Bureau, more than 50 percent of the prison population belonged to Dalit, Muslim or Adivasi families (Prison Statistics, 63–64). Since these numbers predominantly consist of those belonging to the marginalized groups, inadvertently, the database will also majorly consist of the DNA profiles of members from these communities. Thus, a unified database would make them all the more susceptible to institutional biases and vulnerable to the risks of caste and community-based profiling by law enforcement agencies.

Even without the DNA Regulation Bill, private biotechnology companies already indulge in the collection of genetic information from the citizens. Private companies such as 23andme, Ancestry.com also offer self-testing kits to the public. Some of these DNA labs, for example, the Centre for DNA and Fingerprinting and Diagnostics (CDFD) in Hyderabad asks its customers to provide caste details as well (Majumdar, “What the DNA Profiling Bill Means for Your Data Privacy”). Some state governments have also partnered with private firms to collect DNA data from citizens. In 2018, the Chandrababa Naidu led government in Andhra Pradesh, partnered with Shivom, a German genomics and precision medicine company to collect DNA from 50 million citizens for storage using blockchain technology. Working from a development centre in Fintech Valley with assistance from the government’s International Centre for Digital Technology, the company plans to collect saliva swabs, use genome sequencing to get the test results which will then be encrypted and stored digitally, accessible only to them. What’s critically alarming is that while the data might be secure, the company can still share or sell the data to third parties (Bhattacharya, “The Andhra Pradesh Government Plans to Use Blockchain to Collect DNA Data of 50 Million Citizens). The same year as the Shivom facility was set up, 23andme, as well as Ancestry.com, was reported that the DNA databases of the company were sold to global pharmaceutical companies such as GlaxoSmithKline, hence raising serious concerns surrounding the issue of DNA data privacy (Brodwin).

DNA Testing: The Story of China

Today, fears of government control over genetic data have increased multifold even at a global level, after China’s national project to create a national DNA databank as a part of mandatory documentation the entire population’s biometrics began in 2017. As of June 2020, China holds the world’s largest collection of genetic material with over 80 million DNA profiles stored by the state (Wee, “China Is Collecting DNA From Tens of Millions of Men and Boys,”). This is despite the fact that the project by the Ministry of Public Security is still in its infancy, having commenced operations only in February 2017. Today, the government collects from every citizen, DNA samples along with blood types of residents in the region, fingerprints, iris scans etc. Sophia Richardson, China Director of the Human Rights Watch claims that this mandatory data banking of DNA of an entire population violates international human rights guidelines and is disturbing since it is “done surreptitiously in the guise of public health programs (Richardson, “China: Minority Region Collects DNA from Millions” ). The Human Rights Watch writes that the biometrics of the citizens are collected by the authorities through fake medical and fitness examinations called “Physicals for All” where they’re then asked to submit their blood samples etc. Whether they are informed of the said data being collected for the purpose of storage in national databases is uncertain.

Earlier this year, the HRW reported that from kindergarten to high school, male students were being instructed to provide saliva swabs without any prior information being provided as to what it was for. The effort to collect DNA from the male population for a separate male DNA database has now taken precedence with the police claiming that in most instances of violence in the country, the convicts were male.

What is most disconcerting is that the stored DNA data is also being used to identify and persecute the minority muslim population of Uighurs among others. In 2016, an Uighur Muslim man testified to the HRW that he had participated in the Physicals for All as, for his community, those who did not participate in the program would be seen as politically disloyal — or as it was known in China, having a “thought problem” — and further repressed for the same (Wee). While the Republic is repeatedly known to use its surveillance mechanisms to crush dissent and nonconformity with any of the guidelines laid down by the ruling Communist Party. The DNA databank is proving to be the deadliest means so far.

The situation in China might have been a result of the country’s authoritarian politics and policies, but the risk of such fragile information being tampered with, manipulated and used to cause potential harm to humans or even entire communities, still persists regardless of regional boundaries. While India might still be far from being a surveillance state like China, the case of China’s treatment of the Uighurs using their genetic data against them highlights the possibility of the bill being abused if in the wrong hands. Such a scenario in the Indian context would not only rupture the volatile fabric of socio-cultural diversity in the country but would sound a death knell to democratic and constitutional values.

Conclusion

The DNA Technology Regulation Bill of 2019 that has raised several eyebrows in the parliament, is currently under the examination of the Standing Committee for Science and Technology. The Bill proposes the centralization of the authority on accreditation and regulation of genetic information in the country. It proposes a unified national data bank headed by a centrally appointed board as well as regional databanks for gathering data from DNA laboratories in the country. The bill, it is claimed, will be monumental in forensic and law enforcement purposes as it will enable testing and storing of DNA data of offenders, suspects etc and will enable the delivery of speedy justice in the country. However, the bill has several pitfalls, some of which could have extremely detrimental effects on the people once implemented. While focusing on the usage of the data for purposes of forensic studies and criminal justice, the bill maintains ambiguity in provisions on DNA testing for civil matters like ancestry tests. It also does not conclusively talk about the deletion of data once its purpose is served. It provides extremely intrusive information, allowing data to become susceptible to misuse by third parties and governments. While studies from the US and UK reinforce the significance of the discourse around DNA, data privacy and data protection, those from Russia’s history of using genogeographic mapping and racial profiling, and extreme instances of ethnic profiling using DNA tests in China ignites fears of chances of caste and community-based profiling. The case study of China’s national biobanks where DNAs of the entire population are being mandatorily collected, stored and misused to impinge on the rights of the minority population to dissent, highlights the seminal issues apropos misusing mass-collected sensitive genetic data to marginalize and oppress the minorities. In the Indian context, the Andhra Pradesh government’s partnership with a private firm to gather DNA data from citizens without any satisfactory law in place to prevent abuse of data or selling of data to third parties proves that the still lacks sufficient maturity when it comes to awareness about the risks of breach of vital and sensitive information — such as that provided by the DNA test. The consequences that might ensue such a hasty move to bring forth a bill into the parliament without societal or governmental preparedness, will only be disastrous.