Students made guinea pigs in sex study
When I first heard about the incident where about 200 students from an elite school in Delhi were stripped and their genitals examined, I was shocked. Some sources say that as many as 400 students were examined without permission from their parents. All this was done by a private research group called based Health Care and Research Association for Adolescents (Noida-based).
I thought of writing about it, but thought I would wait for more facts to come out. The National Commission for Protection of Child Rights (NCPCR) and the Delhi government had ordered an inquiry into the incident.
What bugged me was that the principal actually defended the actions of the school. She said that it was just a “routine medical check-up”. A survey where boys had to unzip their pants and girls had to open their shirt buttons! And the doctors claimed they were checking for health problems like hernia…but now as more details have been revealed, its come to light that the parents of the children (who were below 18) were not asked for permission for this study. The doctors “assumed” that the school had taken permission but I think this is a cover-up. I feel they they knew that most parents would refuse and therefore decided not to ask.
The objective was commercial!
But the most shocking news I read yesterday. The committee set up by the National Commission for Protection of Child Rights has come to the conclusion that doctors violated the privacy of school students in collecting data on adolescent growth. Their investigations have shown that the doctors “were collecting data for commercial purposes and it had no link with the school health scheme!” Apparently girls were asked what brand of underwear they used! There are discussions on as to whether to revoke the licenses of the doctors…
(Update: 2ndAugust) This news report tells us that the school has been asked to opologise, but no action is being taken against the school. This has happened even though the committee has reported that “none of the regulatory, legal and ethical issues were addressed.” And hear this. A similar study was conducted in the same school in 2003! The committee also found that all the data that the docs wanted for their own use had been meticulously collated, while that which could be of use to the children was “treated with indifference.”
This particular incident has raised a stink not just because its about sex but because its about children. But the fact is that such things go on unchecked in our society. So-called studies like these are a routine practice in many hospitals.
I will give you a small example. When my mother-in-law was taken for her cataract operation and she was being ‘prepared’ for it, I noticed an injection being given to her, besides other things. This was outside the Operation Theater. I asked the senior nurse what this was for, quite casually and not thinking it was anything out of the ordinary. He murmured something incomprehensible and that made me suspicious. When I insisted that he tell me what that injection was for he became aggressive and rude. He said the hospital was conducting a ‘study’ on patients with cataract above a certain age and this was all for the benefit of patients so I shouldn’t bother him with such questions. All this was for our good, and for the good of the society at large. But he should have at least told us I said. Oh, that was not possible, they don’t tell anybody as patients will refuse he said! I let the incident go as my mother-in-law was being wheeled into the OT…
I wonder how many unsuspecting patients are unknowing participants of medical studies, many of which have a commercial objective?
Plenty of unethical medical research on in India.
Actually much larger-scale studies happen in India as this article (2004) shows:
There is no effective monitoring mechanism for research, and existing regulations are to be relaxed shortly as India encourages the outsourcing of clinical trials from the West…besides the fact that the ill in India are largely “drug naïve” (read ‘untreated’), the company also lists high enrolment rates, good patient compliance/retention, “competitive costs”, and an “increasingly accommodating regulatory environment” as the other benefits of conducting clinical research in India. But the fact is that there are no available figures of the extent of clinical trials and other research. There is no central registry for medical research in India….Multinational drug companies have been conducting clinical trials in India for years, directly or through clinical/contract research organizations (CROs) which conduct the trials for a fee.
Indian companies are not far behind! Indian or multi-national, all are guilty! Bangalore-based Biocon and Hyderabad-based Shantha Biotechnic as well as Mumbai-based Sun Pharmaceutical Industries Limited have been under a cloud for conducting medical testing of drugs without proper approvals. Oral cancer patients at the Regional Cancer Centre, Thiruvananthapuram were also subjected to testing…there is also the case of Indian diabetic patients who were used in a clinical trial by a European pharmaceutical company with a drug that was “subsequently found to cause cancer in rats and mice.”
Lack of awareness in India
As there is a higher level of awareness amongst patients in the west and because companies fear the legal system there, multi-national companies find India easy to use. But I do not think that we should blame them. We should set our own house in order first. Our own companies are doing this too, all to make money. I am sure altruistic motives exist as well, but if patients can be harmed and are unaware of the consequences its most unethical. Also desperately poor people feel that any kind of drug (even if it is untested) is better than none and thus they become vulnerable to exploitation.