Legal researcher Usha Ramanathan speaks about the the modified draft Bill which continues to raise several critical concerns relating to privacy, ethical usage of DNA samples and DNA database.
This week, the Department of Biotechnology (DBT) uploaded a slightly modified draft of the Human DNA Profiling Bill on its website, opening up the controversial Bill, now tabled in Parliament, for public scrutiny.
Legal researcher Usha Ramanathan, a member of the Committee formed by the Centre in 2013 to review this Bill, spoke to The Hindu about the modified draft Bill which continues to raise several critical concerns relating to privacy, ethical usage of DNA samples and uses of the proposed DNA database. In February this year, she wrote a dissent note to the DBT highlighting the Bill’s controversial provisions, but her concerns remain unaddressed.
“Like the Unique Identification (UID) project in which the government collected biometric samples of citizens to create a general database, marketing it as ‘Aadhaar’ or the basis for citizens to seek entitlements, the DNA database too aims to collect citizen DNA samples and make a database out of it. In UID, biometric data samples were collected from willing or coerced citizens, but there was no way people could opt out of the database once in it, as no consent clause or guidelines for sample collection were specified for it. The DNA Profiling Bill too brings similar concerns,” she says.
Biometric through Aadhaar
With the Supreme Court now coming down heavily on the government for insisting on biometric profiling of citizens through Aadhaar, the question is whether the government ought to push the draft DNA Bill in its current form, given its unresolved concerns. The Bill contains provisions for a volunteer’s index and collection of “such other DNA indices as may be specified by regulation,” which, Ms. Ramanathan says, is problematic, as it is not sure who might be coerced into giving biological samples under these provisions.
The Director of the Centre for DNA Fingerprinting and Diagnostics in India (CDFD), based in Hyderabad, will always be the ex-officio member-secretary of the DNA Profiling Board as per the Bill. That the agency has been given considerable powers to take decisions regarding DNA sample usage and regulate DNA profiling in India is itself a cause for concern, she says. The reason is the 12th plan (2012-17) document put up on the Department of Science and Technology (DST) website, describes the CDFD as intending to conduct “Human population analysis with a view to eliciting signature profiling of different caste populations of India to use them in forensic DNA fingerprinting and develop DNA databases.” An identification form for DNA sample tests, put up on the CDFD website, of which The Hindu too accessed a copy, includes an entry column for filling ‘caste and origin of State’ information. Ms. Ramanathan says this is the source of current concerns regarding how an agency empowered by the proposed law might use DNA samples to profile people on the basis of caste.
Further, Schedule I under the Act, in the ‘List of Matters for DNA Profiling’ allows for data collection on maternity or paternity disputes, issues relating to pedigree, surrogacy and immigration or emigration as well.
The Board, in which CDFD plays a central role, will also control how privacy concerns are addressed. With the ongoing Supreme Court case on Aadhar not taking a definitive stance on privacy, the privacy concerns raised by the DNA database project too hang in the balance, she says. The UIDAI vs. CBI case has revealed the difficulties of safeguarding a database — apart from the technical difficulties — when such a database has been created, she says.
There are clearly scientific ambitions fuelling the DNA database project, Ms. Ramanathan says. In the same 12th plan document, CDFD is also described as aiming to work on molecular genetics, cytogenetics, biochemical genetics, newborn screening centre and develop a national database for genetic disorders.
No studies have been done on the costs involved in pursuing the extraordinary ambitions that the Bill sets out, she has pointed out in the dissent note submitted to the government. “The DNA database annual report of UK shows that the UK Home Office spent £2.2 million in 2013-14 in running the National DNA Database on behalf of the UK police forces. Can India afford to pump in such vast sums of money to aid a scientific agency’s research ambitions?” she asks.