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

Peter Popham on human guinea pigs
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The Independent Online
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.