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Students made guinea pigs in sex study

August 1, 2007
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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.

Related Reading: Are foreign pharmaceutical giants making Indians guinea pigs in clinical trials?
Value of life in India

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28 Comments leave one →
  1. August 1, 2007 10:08 am

    It is appalling. There are no words. So, I am going to ask a question. What do you think the odds are that the government will create an effective regulatory agency to oversee clinical trials and the pharmaceutical market?

    Forgive me if this question does not make any sense, I need to study up on Indian government. But I am just wondering.

  2. August 1, 2007 10:19 am

    OH MY GOD !!!!!!!!!!!!!

    This is too much.. I can’t rely on Govt. anymore.. As a parent I myself have to find ways to stop this.

    Life is getting horrible in schools.. Every week I hear wiered news from schools.. recent Rape case in kendriya Vidyalaya school in chennai.. was too much.

    I’m Worried.

  3. August 1, 2007 10:20 am

    Actually there are regulations but these are not up to international standards. Also people are more gullible here. Here is a link:

    advantages of conducting clinical trials in India

    # A large pool of patients, from multiethnic and multiracial backgrounds
    # Rapid patient recruitment, which significantly reduces the clinical development process
    # Wide spectrum of diseases. Multidrug-resistant pneumonia, Hepatitis B, diabetes, and some cancers are far more prevalent in India than in the West
    # Drug companies can save 30%-50% by conducting trials in India as compared to the West
    # Data generated in India is accepted by all major conferences and journals
    # Investigators are mostly trained in the West
    # All hospitals and private institutions store comprehensive source data, mostly in English
    # Subject recruitment is the most common rate-limiting step in the drug development process. Sponsors normally cannot reduce study timelines without sacrificing quality and incurring increased costs. India offers sponsors the opportunity to recruit subjects quickly while maintaining a high level of quality. The relative cost savings result not only from shorter timelines but also from the low cost of performing studies in India.

    So its not as if all these trials are bad or without permissions. Its just the system (corruption in India plus ignorance and vulnerability of the poorer populace ) can result in exploitation.

  4. August 1, 2007 10:32 am

    You know, I have always argued that international companies have a moral obligation not to engage in behaviors that are not acceptable in their homelands strictly because the law in another country may allow it. Law does not in any way equal morality.

    I mean, it’s not like this is a gray area. Testing patients without their consent is just morally unacceptable. Not to mention the whole thing with the children. It is awful and I can assure you that if more citizens of the countries where the parent drug companies are based were made aware, there would be a severe public backlash.

    I know that this looks like an Indian problem; but given the international nature of corporations, this is global. I am ashamed and mortified that American companies are some of the ones engaging in these practices in your country.

  5. Vivek Khadpekar permalink
    August 1, 2007 10:34 am

    Nita, Aikaterine,

    The incidents you report are bad enough. Far more shocking are the cases of organ harvesting, for trade, from unsuspecting patients without their knowledge or consent. Very few of these cases are reported in the media. In some countries (not in India, I hope) such practices are engaged in with the tacit approval of the government. No prizes for guessing which class of society most of the victims belong to.

    However, to be fair, there are also instances of reputed and responsible doctors formally becoming party to field trials of new drugs and surgical procedures developed by major corporate entities in the health care field. Often it may only require the doctor to share scientifc data on the treatment given to patients using the procedures being tested. However, responsible professional as well as commercial practice demands that all such trials must be done only with the knowledge and informed consent of the patient, under strict monitoring and with adequate checks and balances. The patient has every right to refuse permission, and (although this has not been legally tested for enforceability) may sometimes be in a position to negotiate some concessions in the fees paid for treatment or benefits in kind from the outcome of th trials.

    Basically a lot depends on the professional and personal integrity of the doctor. These cannot come from formal education alone.

  6. August 1, 2007 11:13 am

    Deplorable. The perception that human life in India is comparatively ‘cheap’, is what is drawing all the unethical pharmaceutical firms – how anti-human!

  7. August 1, 2007 11:13 am

    You are right Vivek.

    I think why I am so passionate about this, is that I own a socially responsible business. I personally ensure that the communities from which I buy my raw material provide a fair wage, good working hours and meet other criteria. I do not care what the law in their country states. I know better than to violate another human being. I am not saying that the laws in every country need to be the same as in mine; in fact, I find a lot wrong with our laws. But, as we all seem to agree, there are some universal guidelines that are being ignored here.

    I am proof that international companies can make a profit while also protecting the sanctity of the soul and making the quality of life in other countries richer. And it infuriates me to see companies behave as though they do not know any better.

  8. August 1, 2007 11:33 am

    even I was horribly shocked when I first heard this on NDTV. I had never expected such a thing out of such a reputed school…

  9. Nil permalink
    August 1, 2007 3:12 pm

    How disgusting and demeaning it must have been for these children.

  10. August 1, 2007 3:22 pm

    hey, Your post is on wordpress Dashboard (News Departments) for quite a long time..

    Note: it appears randomly

    Bharath

  11. August 1, 2007 5:28 pm

    Thanks Bharath…whenever I go there though I can’t see it. Anyway, you mean you have seen this particular post there?

  12. August 1, 2007 5:33 pm

    I have seen this particular post there a couple of times today. I think they had it under the world category. But it does appear to be random.

  13. August 1, 2007 8:52 pm

    I saw it too. It is appearing on the wordpress homepage, in News section, under World category. I’ve saved the screenshot, am emailing it to you.

  14. Amit permalink
    August 1, 2007 9:07 pm

    Great discussion.. I have hat-tipped Desipundit to feature this!

    That aside .. I think its really shocking! and outrageous too! I wonder what the legal recourse here is!

  15. August 1, 2007 9:23 pm

    Vivek is absolutely right and Aikaterine makes strong point that this is an international issue. The fact that human beings of a certain class may be considered fertile fields to be exploited in the name of progress largely due to their awareness of their rights or of being in a precarious and vulnerable living condition is absolutely deplorable.
    I personally have been part of clinical trials for an anti-cancer drug and also for a new antibiotic. In Canada, informed consent is required before such trials can take place. In my own case side effects that could be anticipated that might cause complications and added discomfort were clearly outlined. At the time of the trial I figured i had little to lose, being in extremis, and understood that submission to experimentation was going to provide added knowledge that could benefit others in a profound way.
    Studying the developing genitals and secondary sexual characteristics of young people without clarifying the reasons for doing so is clearly criminal, but also demonstrates that the contemporary obsession to understand absolutely everything and studying them within a scientific model tends to trample basic human rights to self-deterination. It is a question of ethics.

  16. August 1, 2007 9:48 pm

    Thanks for posting about this, very interesting and worrying case which I’ve now written about over at philosophy and bioethics. It does seem a clear violation both of the need to seek parental consent, but also of the student’s rights. Sadly even with parental consent research like this can still be worrisome, especially if it is such a hodgepodge of a a piece of research I can’t imagine what the research question would have been…

    Cheers
    David

  17. August 1, 2007 9:49 pm

    Amit, for one thing the medical fraternity itself needs to take some action. We have a medical council which oversees this. I feel the doctors should lose their licences to practice. Only harsh punishment like this will deter future offenders.
    As for the school, I hope the parents take the school and the docs to the courts. I think there is nothing worse than exploiting children.

  18. August 1, 2007 10:54 pm

    I had not heard this story until I saw your blog. I do scan the usual news networks on a daily basis for top stories from India. I think just the fact the traditional media has kind of ignored this event(my assumption is that I would have heard about it if otherwise, also I do not have access to Indian TV channels where I live), is appalling.

    I do agree that the medical fraternity should be more strict on such cases and the parents also should take the matter to the court. Parenting in new age comes with a lot more responsibitly than the older times.

    Venkatesh.

  19. उन्मुक्त permalink
    August 1, 2007 11:10 pm

    यह तो मानवाधिकारों का हनन है।

  20. Vidhya permalink
    August 2, 2007 12:48 am

    Hi Nita,

    I remember the Thrivanathapuram case in our bioethics class. We did a number of case studies regarding unethical practices by science professionals under the cover of clinical trials on various parts of the country. I agree that the lack of implementation of strict rules regarding informed consent, such malpractices are rampant in US, Europe and Australia. The difference is in India, the repercussions are not severe enough. I second your suggestion that only harsher punishments will deter others.

  21. August 2, 2007 3:19 am

    It makes me angry to think that multinationals use patients without their consent. I can’t see the altruism in this situation.Maybe Michael Moore should do another documentary!

  22. August 2, 2007 3:22 am

    Both Canada and America and — of course — several European countries, have had similar experiences in the past. During the 1960’s the CIA sponsored experiments in Canada regarding the effects of LSD, the subjects of which were unwitting Canadian university students. Then there was the infamous Tuskegee Syphilis Study, or Tuskegee Experiments, where 600 African American’s sharecroppers were denied treatment for Syphilis for 40-years to see what would happen. The Tuskegee Experiment only stopped, in 1972, because of a leak to the press. The Canadian government also experimented on Canadian soldiers, testing the effects of chemical weapons (Agent Orange) on them.

    Protecting its citizens is the key infrastructure of a democracy. There are so many examples right now of citizens being left unprotected in India… first, it’s probable these kinds of things have been happening for decades without media reports, but with an opening and more engaged society they are being reported on for the first time. Second, with more reports and more community outrage, changes will be made and India’s citizenry will become more and better protected. Third, until the protections are put into place, and people understand why they’re there, unscrupulous researchers from around the world will use the Indian people as “guinea pigs”.

    Where there’s one there’s almost always a second, so expect other schoolchildren to come forward with their own horror stories regarding abuses performed on them in the name of “science”. And that’ll be the most important thing, children / people don’t understand what is “abuse” until it has been defined.

  23. August 2, 2007 7:43 am

    U mean that people are being used as lab rats for medical research and advertising strategies?
    I hope they see the inside of 3 Deewarein. Probably not cos the warden will still treat them like humans instead of the animals they are.
    I hope your mother-in-law is alright.

  24. shai permalink
    October 19, 2007 12:55 pm

    Hi Nita, I work with NDTV and I am keen to talk to you. Can you email me on shai (at) ndtv dot com pls. Thanks

  25. August 29, 2008 3:05 pm

    This is truly apalling. These crooks are making use of the fact that patients blindly trust their doctors and do not question anything!!!

    And to think, medicine is a noble profession!!

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