India: where middle-class life is valued, and the poor are another species

Peter Popham on human guinea pigs

Share
Related Topics
Delhi - The single most obnoxious thing about living in a country as poor as India - the thing one feels most uncomfortable about getting used to - is the discrepancy in the way human lives are valued. It's a commonplace of journalism that, in news values, 4,000 washed away in a cyclone in Bangladesh is the equivalent of 40, or four, killed closer to home. Sitting in London, it's easy enough to find acceptable explanations: it happened far away, these are countries of which we know little, such disasters happen all too often. It's easy to persuade oneself that the discrepancy is not down to anything so fundamental as a failure of humanity.

Living in India, however, such discrepancies are much harder to rationalise away. A tiny fraction of the population here is as well off and privileged as the likes of me, or more so. A large majority are still today, six years after liberalisation began to unfreeze the economy, living on next to nothing, a few hundred pounds a year. For the pampered few there is private medical care, private schooling, chauffeurs and servants. For the many there are schools without teachers, hospitals without equipment, buses that plunge into ravines.

For us wealthy ones, life is as dear as it is in the West. Middle-class tiny tot gets squashed under a bus and "the safety of our children" is all over the papers for days. Last month more than 60 "Dalits" (untouchables), mostly women and children, were massacred in the middle of the night in rural Bihar by a private army of feudal landlords. Of course it was front page news, but there was a strong undertone to the reporting of, "well, what do you expect in rural Bihar?"

Ties of caste and family mean everything here; the ties that bind all citizens together mean very little. In the relations between strangers there is an undercurrent of brutality and callous disregard - watch that ragged fellow on crutches skip across the road as the official car carooms towards him - that makes ordinary British behaviour seem amazingly courtly.

As a journalist, one becomes sensitive to this. So the headline on the front page of the Times of India the other day that started "It's unethical to use human beings as guinea pigs ..." naturally caught my eye.

The gist of the story was as follows. Twenty years ago, India's foremost cancer research organization, the Institute of Cytology and Preventive Oncology, initiated a research project, unusually ambitious for India, into cervical cancer. The first indication of incipient cervical cancer is "dysplasia", a lesion in the cervix. It can only be detected by a test, and if detected it can be treated by a simple operation which halts the potential malignancy in its tracks. This is a very common operation. But the great majority of such dysplasias - over 90 per cent - if left untreated, do not develop into cancer but in time merely clear up on their own. In their study the Indian doctors wanted to observe the progress of cervical dysplasia, to see what they could glean about why some of them became cancerous while others disappear.

The knowledge such an investigation could produce would obviously be useful in the future treatment of the condition - and the results have in fact helped the national cancer programme develop screening guidelines. But there was an obvious problem with the research, which more eagle-eyed readers will already have spotted: namely, how to get the cooperation of the subjects.

Present them with the facts - you have this dysplasia, if we operate it will go away and you will be fine, if we don't it may become cancerous, but it will be interesting for us to observe this process and afterwards you can have a hysterectomy - and it's not hard to predict how any woman in possession of her senses would react.

To circumvent this problem, the research team kept the 1,100 women selected for the research, all of whom had dysplasia, in the dark about what was going on, and did not attempt to elicit their written consent to it. By the end of the study, 71 of them had developed malignancies.Well, retort the doctors involved, at the time, under Indian guidelines, we were not required to obtain written consent. In any case, we couldn't have done. The women involved were illiterate.

They were not, in other words, of our sort, to be cherished and informed and treated with respect. They belonged to that huge, sometimes threatening but often extremely convenient Other. No one is saying that they were treated sadistically, with the brutishness of the Japanese or the Nazis in World War Two. But they were coolly watched while, all unbeknownst to them, their harmless lesions grew into malignant tumours. And there's something about that that freezes the blood.

I set off with the science journalist who broke the story, Ganapathi Mudur, to try to find some of the survivors. Following leads from a report in The Pioneer, we drove to a place called Allipur in the smoggy, ramshackle suburbs north of Delhi and found the women mentioned without difficulty. But then the trail went cold. The women talked vaguely about arrogant doctors, about being dumped in the middle of Delhi without transport home, but when pressed harder it turned out that the study they were involved in started in 1991, three years after the one we were interested in had finished. We made our excuses and left, gnashing our teeth at the sloppiness of Indian journalism.

This is an old story. Theoretically it couldn't happen today: written consent has been required since the early 1980s. But several doctors told me, off the record, that even today consent is rarely taken, and that most research is still done by subterfuge. I can't prove it, I haven't found anybody who will stand up and say it's happened to them. But I have a nasty suspicion it's true.

React Now

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

Austen Lloyd: Private Client Solicitor - Oxford

Excellent Salary : Austen Lloyd: OXFORD - REGIONAL FIRM - An excellent opportu...

Austen Lloyd: Clinical Negligence Associate / Partner - Bristol

Super Package: Austen Lloyd: BRISTOL - SENIOR CLINICAL NEGLIGENCE - An outstan...

Recruitment Genius: Sales Consultant - Solar Energy - OTE £50,000

£15000 - £50000 per annum: Recruitment Genius: Fantastic opportunities are ava...

Recruitment Genius: Compute Engineer

Negotiable: Recruitment Genius: A Compute Engineer is required to join a globa...

Day In a Page

Read Next
Syrian refugee 'Nora' with her two month-old daughter. She was one of the first Syrians to come to the UK when the Government agreed to resettle 100 people from the country  

Open letter to David Cameron on Syrian refugees: 'Several hundred people' isn't good enough

Independent Voices
Amjad Bashir said Ukip had become a 'party of ruthless self-interest'  

Could Ukip turncoat Amjad Bashir be the Churchill of his day?

Matthew Norman
Syria crisis: Celebrities call on David Cameron to take more refugees as one young mother tells of torture by Assad regime

Celebrities call on David Cameron to take more Syrian refugees

One young mother tells of torture by Assad regime
The enemy within: People who hear voices in their heads are being encouraged to talk back – with promising results

The enemy within

People who hear voices in their heads are being encouraged to talk back
'In Auschwitz you got used to anything'

'In Auschwitz you got used to anything'

Survivors of the Nazi concentration camp remember its horror, 70 years on
Autumn/winter menswear 2015: The uniforms that make up modern life come to the fore

Autumn/winter menswear 2015

The uniforms that make up modern life come to the fore
'I'm gay, and plan to fight military homophobia'

'I'm gay, and plan to fight military homophobia'

Army general planning to come out
Iraq invasion 2003: The bloody warnings six wise men gave to Tony Blair as he prepared to launch poorly planned campaign

What the six wise men told Tony Blair

Months before the invasion of Iraq in 2003, experts sought to warn the PM about his plans. Here, four of them recall that day
25 years of The Independent on Sunday: The stories, the writers and the changes over the last quarter of a century

25 years of The Independent on Sunday

The stories, the writers and the changes over the last quarter of a century
Homeless Veterans appeal: 'Really caring is a dangerous emotion in this kind of work'

Homeless Veterans appeal

As head of The Soldiers' Charity, Martin Rutledge has to temper compassion with realism. He tells Chris Green how his Army career prepared him
Wu-Tang Clan and The Sexual Objects offer fans a chance to own the only copies of their latest albums

Smash hit go under the hammer

It's nice to pick up a new record once in a while, but the purchasers of two latest releases can go a step further - by buying the only copy
Geeks who rocked the world: Documentary looks back at origins of the computer-games industry

The geeks who rocked the world

A new documentary looks back at origins of the computer-games industry
Belle & Sebastian interview: Stuart Murdoch reveals how the band is taking a new direction

Belle & Sebastian is taking a new direction

Twenty years ago, Belle & Sebastian was a fey indie band from Glasgow. It still is – except today, as prime mover Stuart Murdoch admits, it has a global cult following, from Hollywood to South Korea
America: Land of the free, home of the political dynasty

America: Land of the free, home of the political dynasty

These days in the US things are pretty much stuck where they are, both in politics and society at large, says Rupert Cornwell
A graphic history of US civil rights – in comic book form

A graphic history of US civil rights – in comic book form

A veteran of the Fifties campaigns is inspiring a new generation of activists
Winston Churchill: the enigma of a British hero

Winston Churchill: the enigma of a British hero

A C Benson called him 'a horrid little fellow', George Orwell would have shot him, but what a giant he seems now, says DJ Taylor
Growing mussels: Precious freshwater shellfish are thriving in a unique green project

Growing mussels

Precious freshwater shellfish are thriving in a unique green project