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India's Biodata

The first DNA bank may mean everyone has an identity... your details are out there too

How We Are The Way We Are

What is DNA?
DNA, or deoxyribonucleic acid, is the hereditary material in the cells of living organisms.

What is its Role?
DNA has genetic information encoded in a combination of four chemical bases. These bases come in pairs and their unique sequence determines our traits.

What a DNA Bank Does

  • 4 drops of blood are taken and stored on a chemically-treated cloth that preserves it. 
  • One drop taken to isolate DNA.
  • The isolated DNA is stored for 50 years for a cost of Rs 650. It is stored alongside one of the remaining three blood drops at -196° Celsius. The other two are stored separately at 4 degree Celsius.
  • Isolated DNA is genotyped, i.e. the sequence of its base pairs is obtained. It’s a set of 10 pairs of coordinates and is unique to everyindividual.
  • The information gathered is stored in a "secure" online database along with other personal details.
  • Some of the information is encoded onto the smart card given to the individual.Data can also be accessed online.
Benefits
  • It allows for identification of members who may be stranded anywhere in the world without ID papers
  • The unclaimed bodies of members can be identified using DNA samples from accident sites
Concerns
  • DNA databanks attract people with intent to misuse information that may reveal personal details
  • Burlington Northern Santa Fe Railroad Company in the US paid out $2.2 mn for conducting genetic tests on staff—without consent—for likely on-job stress injuries

I
t's a little after noon and Saeed Ahmad is already well into his 20th cigarette of the day. It will go up to as many as 80 by the time he sleeps. When you are the sole depository of intimate genetic information of over 2,000 people—and aiming for several millions—it can get stressful. "I also mix various chemicals for use in my lab. It's quite destressing," he says, his eyes scanning the lab's activities being played out on theCCTV atop his desk.

Ahmad is the director of India's first human DNA bank, which opened to the public in June earlier this year. Based in Lucknow, it's a pioneering exercise that seeks to store and useDNA information—unique to every individual—for identification purposes on a mass scale. "It's the ultimate identification tool that god's given us. Even a fingerprint replicates itself in a billion population, but never ourDNA coordinates," he points out. DNA banks exist abroad too but they are mainly meant for crime-related purposes or scientific research.

The idea for such a bank came to Ahmad after the September 11 attacks in New York. "We had parts of bodies but didn't know who they belonged to. Had theirDNA been identified earlier, they could have been easily recognised, which would have been a real comfort to relatives," says the cytogenetics expert. "A funeral, after all, is the last right of a human being." Closer home, numerous terror attacks, child trafficking and the growing use ofDNA identification by law-enforcing authorities convinced Ahmad he had a viable project.

While far from a runaway success, the bank has made a modest beginning with 2,175 persons banking theirDNA since its opening. A closer look at these individuals reveals a morbid trend: most have banked theirDNA because of an innate fear that they may end up as unclaimed bodies in our unpredictable times. "My clients," says Ahmad, "mainly include real estate developers and contractors, frequent travellers and students who have moved out of their hometowns."

Arti Roy, one such client, thinks it will help in circumstances where she may find herself without identity papers, or in an accident. "I also plan to get it done for my brother who studies far away," she says. In a way, the bank lives off and hopes to prosper because of the growing insecurity in our lives. To which Ahmad counters, "It is just like the way doctors survive because of patients."

The bank is a public-private partnership betweenIQRA Biotech Services, which Ahmad heads, and the central and UP governments. The first collection centre outside Lucknow will soon open (in Hyderabad), followed by others. Once theDNA sample is isolated from a person's blood and genotyped, the information is stored on a master database. A smart identity card with some of the details is then handed over to the client. Ahmad argues that such aDNA-based identification system, if used widely, would have numerous beneficial applications; besides unclaimed bodies, it will help identify stranded or lost Indians anywhere without any identity papers. "All this with the firm knowledge that nobody can replicate one'sDNA," he says.

The genetic information is stored along with other personal data such as height and weight, even a person's disease history. This is a double-edged sword as any suchDNA storehouse attracts people with intent to misuse the data, which includes unauthorised medical research. Of course, apart from banks, abuse may also happen because of illegal use ofDNA extracted from body fluid samples in pathology labs. Or those given to special labs that carry out genetic testing to let a person know what disorder he/she is likely develop. To avoid possible leaks, Ahmad says he is the only person who knows where theDNA samples are stored. A five-layered identification process protects the database. "As long as theDNA is stored here, it will not be passed on to anybody. Only the government can demand DNA samples," he clarifies.

Even so, the public DNA bank has opened up some unprecedented terrain in privacy issues. Our genes are storehouses of who we are and how we are the way we are. This debate is all the more relevant for India—where science and technology has long outpaced our sloth-like legislative machinery—we are yet to enact any legislation that would govern public DNA banking. Critics point out that if your genetic privacy is violated, you will have to live with it. That could mean people knowing, for example, why you are obese or even what your sexual orientation is. And that without the necessary laws, even legal pursuit will be a nightmare.

W
hich brings us to a tricky question: do we have the right to our DNA? Ahmad's answer is a categorical no. "Why do you think we are booked under Section 307 if we attempt suicide? We do not even have the right to our lives." The government, if it wants, can forcefully acquire DNA samples for research or other purposes. Employers, on the other hand, may want to discriminate against people with a propensity to certain inclinations or diseases.

Sujatha Byravan, former executive director for the Massachusetts-based Council for Responsible Genetics, is sceptical of this exercise. "I do not see any benefits here worth taking the risk of violating my genetic privacy. People have broken intoFBI databanks earlier. Why should this be any different?" she asks. Meanwhile, the bank here has proposed a tie-up with UP police to store DNA samples of individuals who are convicted. That raises concerns about possible research to look for people with a "genetic predisposition" to commit crimes. "Then perhaps people will be scanned and those with 'criminal genes' identified before they carry out crimes, this being the overall goal of such research," adds Byravan.

Given the never-ending possibilities of genetic research, any abuse of DNA databanks may bring a new era of eugenics upon us, critics warn. Ahmad counters saying he is all for legislation to govern DNA banking. "But the lack of any should not delay introduction of a new technology that is bound to help so many in need of such a system," he concludes. This debate has just about begun.

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