REQUEST: Need Matrimonial Detective Stories

I'm working on a story about arranged marriages in India and need stories from people who have hired a private detective to do a background check on a prospective spouse. There are lots of stories of people who fake their backgrounds on websites like Bharatmatrimony.com and Shaadi.com to either get dates, marry a second spouse or other sorts of shenanigans. I need to speak with anyone who has hired a detective (whether or not the prospective spouse was in the end ok or not). The story will appear on the radio and in print. I can change names if people want their identities protected. You can contact me via e-mail at sgcarney@gmail.com or via phone at +91-9380185773

So please, forward this on to whomever you know.

Open Letter to Director of Medical Education

This afternoon I will speak to the director of medical education about her role as the head of the ethics board that controlled kidney transplants in Tamil Nadu. At the same time I will also drop by the office of Dr. Chinniyan who controls the records of the one eyed baby, and could release information on her death. This is a copy of the letter I am sending to the DCME.

Dear Director of Medical Education,

For the last six months I have been working on a story for Wired News (www.wired.com) about an illegal clinical trial that may have been going on in Chennai for more than a year. On July 29th a child diagnosed with a rare chromosomal disorder known as cyclopia was born in Kasturba Gandhi Hospital and was registered under the name "Baby of Gomathi". On hearing the reports of the child I traveled to the hospital and spoke to the Superintendent Dhanalakshmi about the child's case. Dhanalakshmi informed me that she suspected it was a random genetic defect and that the child had gone for testing at GH Hospital. However she also stated and that the mother had taken a fertility treatment from an unnamed fertility clinic somewhere in Chennai and that also could have caused the deformity.

She later showed me an internal hospital report that suggested that the mother could have been given an experimental anti-cancer drug known as "cyclopamine" during her pregnancy that is known to cause this sort of deformity. After further investigation with my sources back in the United States, I discovered that several shipments of cyclopamine have been sent to India in the last few years by LC Labs and that it was possible that doctors here in Chennai were running an illegal clinical trial to test the drug.

I believe that the fertility clinic that Gomathi went to for treatment may have dosed her with cyclopamine during illegal medical research. Several years ago Sun Pharmaceuticals covertly tested the anti-cancer drug Letrozole on 400 women telling them that it was a fertility treatment. It is not beyond the realm of reason to think that it could be happening again.

When I returned the Kasturba Gandhi Hospital and informed Dhanalakshmi of the potential ethical problem she denied any possibility of a clinical trial and refused to investigate or share information on the child's case. I urgently request that you share the child's medical records with me (which should now be available since the child died over five months ago) so that I can track down the fertility clinic and be sure that there was no foul play.

You can track down the child's record information from her birth certificate, the information is listed below:

Child's Name: No name, Mother: Gomathi, Father: Nagaraj,
Zone: 06, Division: 86A
Registration Number: 5891
Birth Date: July 29, 2006

Please do what you can to release the child's information. You can contact me via cell phone at 9380185773, or e-mail at sgcarney@gmail.com


Sincerely,




Scott Carney
Wired News

Calling All Open-Source Experts

I am looking for someone who can help set up an online open-source wiki for people to submit tips and follow up leads on bioethics in the developing world. Certain types of stories are simply too big for a single journalist to cover and I am looking for a partner who might be able to help me out with the tech side and track leads on breaking stories. Preferably I can find someone with a good bit of technical expertise as well as a keen interest in social justice. It might also be a great way for an aspiring journalist to break onto the scene.

Anyone interested please e-mail me at sgcarney@gmail.com

Take a Picture, Catch a Quack

Quack doctors come in all shapes and sizes, but one thing that they all seem to have in common is their penchant advertising. As part of my ongoing open source investigation I have begun to photograph different posters, billboards, and office spaces that seem like they might be offering medical services that just don't pass muster. In the case of the cyclopian child, the hospital report I saw stated that the mother sought treatment at a fertility clinic which prescribed her an unknown drug (which may have been cyclopamine). Whatever the case, an expert on medical ethics and editor of the Monthly Index of Medical Specilaties (MIMS), Dr. Gulhati told me several months that these roadside clinics are likely to be gateways for questionable clinical research. I would like to collect and publish as many photos as possible of quack advertising of improbable medical procedures, back alley sex change operations, miracle cures and all other sorts of medical promises that sane people shouldn't touch with a ten foot poll. Please send photos of posters, clinic fronts, or any other questionable medical establishment from anywhere in the world and in any language to sgcarney@gmail.com. Include a translation if you can. So get out your mobile phones and digital cameras and start snapping pictures to end quackery.

For those of you in Chennai, one poster that I was looking for, but couldn't find today, Vadapalani (sp) that I saw two months back. It said "Got HIV, No problem" that I think would be great to photograph.

The three photos here, one of a "modern clinical lab and ECG" is little more than a garrage with someone dispensing medical advice. The other two posters, one looks like a poster for viagra, and the other is for a fertility clinic that offers a dozen different services.

(I am not sure what the poster on the bottom left says, I would appreciate a translation from anyone who can read tamil)

So Many People, So Few Autopsies

Staff shortages and lack of equipment in India's government hospitals mean quick and dirty autopsies for the dead. According to one doctor I had the chance to speak with there are only two forensics departments worth their salt in the city--and none of them are fully functional. The building is run down by American standards--there are blood and betel stains on the walls and mason jars full of viscera in the corners of the doctor's office--but the hospital has one of the few working cold storage units in town--making it a popular destination for bodies that have uncertain causes of death. While I had come to follow up a lead on the death certificate for the one eyed child, we had little time to discuss details of the case as the doctor was headed out to conduct his second post-mortem of the morning. I did, however, have the chance to see lockers jam packed with the recently deceased, and a gurney carrying someone's unidentified remains to their final resting place.

According to The Hindu, the four government hospitals in the city responsible for 7,300 autopsies a year only have 8 board certified doctors. And while doctors can be obliged with conducting several in a day, the pay is poor, coming to just 75 rupees per procedure, or about $2.

"We do not have the tools, nor are we given enough time to do a good job. What we do is just butchery," says an anonymous expert cited in the article in the Hindu. And this is true. Several months ago when I was present at one such procedure the doctor used little more than a hammer, a knife and a saw.

Clinical Trial Knowedge Gap

The government of India and major pharmaceutical companies have a strangle hold on information about medical research that presents a stumbling block for investigations on medical ethics. The most obvious problem is that there is no national directory of clinical trials in India. While pharmaceutical companies have to seek approval from the Indian Center for Medical Research (ICMR) to run a trial, the center keeps the applications under lock and key. Even if researchers did have access to the data, the information is scattered amongst a hundred thousand color-coded folders in central offices and nearly impossible to reference. For the government, such a directory would be useless, anyway. Vasantha Muthuswami, the head of the ICMR, she told me several months ago that while the in center has the duty to authorize clinical trials, it has no power punish companies who skirt the process or conduct an unethical study.

Even more troubling, is a new trend by major pharmaceutical companies to outsource clinical trials to local Contract Research Organizations, who often sign strict confidentiality agreements that keep the identity of their partner companies and details of ongoing trials secret.

So, while we know that Johnson & Johnson, Wyeth, Astra-Zeneca, Pfizer and GlaxoSmithKline have corporate offices in India, most of their research is conducted by proxy organizations. With confidentiality agreements in place the organizations then have the ability to deny any knowledge or relationship to a CRO that gets caught doing something naughty.

The knowledge gap created by these two things means that the only way to investigate clinical trials is to locate whistle blowers in the organizations themselves or find patients who are willing to talk about the experiments. Finding those people is a challenge in itself. (Bodyhack)

Calling all Umbilical Cords

The pregnant yogini next to the bus isn't contemplating nirvana, she's debating whether or not to contribute the umbilical cord to stave off hidden genetic time bombs that have been passed down in her family for generations. As I posted earlier, this advertisement for LifeCell on the side of the road in Chennai is part of a massive umbilical cord harvesting push by biotech companies across India. The text of the ad reads:

"Celebrate peace of mind. For your baby, your family and you. Bank your new born's Umbilical Cord Stem Cells at Birth. Secure the future of your child and your family."

(A Bodyhack original)

India Stem Cell "Therapy" Raises Questions

Biotech companies have been keen to capitalize on India's burgeoning birthrate and make it a factory for world stem cell research and therapy. In Chennai, the American company Life Cell has opened a branch and advertises with billboards across the city for women to cryogenically preserve their umbilical cords in case the child needs future treatment.

But the centers serve a dual purpose. Besides possibly benefiting the child, the blood enters into an international registry to match stem cells to patients all over the world and provide a resource for experimentation. Private clinics have begun to offer stem cell therapies that blur the line between treatment and clinical trials.

The national umbilical cord bank in Mumbai is reputed to be one of the largest in the world and is able to hold over 400,000 units of stem cell rich umbilical cord blood. It was created with a $20 million investment from the South Korean firm Histostem. The center has been in operation for almost a year and the government is only beginning to take steps to regulate the nascent industry.

(Originally posted by me on BodyHack)

What is Open Source Journalism?

Two weeks ago I spoke at to a crowd at blogcamp about a project I have been working on about a one eyed baby born in Chennai in July. Local authorities stopped providing me information once I told them I was investigating the possibility of an unethical clinical trial and since then I have been able to make little progress in the story. My last resort has been to throw open the doors to the blogging commmunity (and any other community for that matter) and share the information I have collected so far hopefully put a few more pieces of the puzzle together.

Since I gave the speech I have been accused by people of not understanding what blogging is all about, and by local media professionals who allege that only trained journalists have the ability to obtain unbiased information from sources. Many people have said that without proper credentials no one would listen to them when they ask a question of an authority figure. I disagree with all of these points at fundamental level. How can we ensure transparency in government and corporate behavior if we don't ask questions? While I do not know if there was a clinical trial of cyclopamine here in Chennai, there is enough evidence here to merit an investigation. Since the authorities do not seem interested it is up to regular citizens to move this foward. And I hope to do this in an open source way.

Anyone is welcome to use the information in this investigation to publish in any medium they see fit. If you can do so for profit, all the better, but if you benefitted from this investigation I hope you will post your findings here. I welcome journalists, citizens, and bloggers to collect as much information relating to the story as possible and share their findings with the rest of the community. Many people are already helping out in the investigation and we have some leads on where to find a birth certificate.

I will give all the information I have save a few phone numbers since publishing them here could result in an unintentional DOS attack that is not the purpose of this investigation. At the moment I am still trying to acquire the mother's address as well as any information we can uncover about illegal clinical trials. There is no central registry of clinical trials, though there is some movement in higher levels of government to create one. I hope that some people who have seen the recent story on Wired News may know people who have been injured by clinical trials, or know someone on the inside who would be willing to talk either confidentially or publicly.

I do not know what we will uncover. I hope that this was just a freak birth defect and that there was nothing illegal or immoral going on, but the sad truth in India is that there have been numerous instances of medical research gone awry here and in the past people have died because of them.

And the only way to know what really happened is to ask questions.

Tags: chennaioneeyedbaby, cyclopamine

Finding the Birth Certificate and Cyclopamine

The Baby's Certificate

With the help of Guru Subbaraman who was referred to me out of the blog camp initiative I have been able to locate the reference number for the one-eyed child's birth certificate. While the hospital refused my request to see the certificate, I have been amazed to discover that the corporation of chennai keeps many birth and death records online.

As a non-Indian I am still unable to request the document, but I know where to find it. Just about anyone but me can request it from the Corporation of Chennai in Egmore.

Child's Name: No name
Mother: Gomathi
Father: Nagaraj
Zone: 06
Division: 86A
Registration Number: 5891
Birth Date: July 29, 2006
Link to record

Cyclopamine for Sale
I was checking out information on my blog on tecnorati and there were two ads from compaies selling cyclopamine. It is quite expenisve (over $1650 per gram) but they ship anywhere in the world for "research purposes". In their defense, the notes on the drug state that it is a known teretogen and that it causes birth defects. Here are the company links: LC Laboratories and Logan Natural Products.

Tags: chennaioneeyedbaby, cyclopamine, blogcamp

Open Source Journalism and the One Eyed Baby

I just got back from giving a short talk at blogcamp about the one eyed child born here in Chennai. I am hoping that the blogging community will be able to move this story ahead where I have run into a dead end. Here is what I know and I have a few suggestions on how to move the story forward

The Facts:
The baby girl was born at Kasturba Gandhi Hospital by a woman named Gomathi on or about July 31st 2006. The child had a single eye in the center of her forehead and severe brain damage. She died early last week, but the hospital has not released a cause of death.

An internal hospital report mentioned Cyclopamine, an experimental anti-cancer drug, as a possible cause for the child's condition. A hospital nurse in the ward said that the mother was taking "tablets" to get pregnant because she had been childless for 6 years. The superintendent, Dr. TMT Dhanalakshmi also said that the mother had gone to a fertility clinic, but that the attendant doctors did not take a complete medical history and failed to ask her what drugs the mother had been on, or the name and address of the fertility clinic. It is possible that a drug that the mother was taking helped cause, or bring to term, the baby's condition. While there is no firm evidence that cyclopamine was involved in the child's condition, there are precidents of anti-cancer medications being prescribed as fertility treatments in clinical trials in India as in the case of Letrozole in 2003.

Cyclopamine is a publicly available compound that can be bought from numerous sources in the United States and can be sent to India. One doctor who e-mailed me after the article in Wired News came out said that he had conducted an independent theraputic trial of cyclopamine on a human patient in the United States.

The hospital was not doing its job when it failed to take a medical history, so we need to take up where they left off.

What Next:
To carry this story forward we need to located the fertility clinic in question and determine what drugs the mother was prescribed. We do not want to berate the mother with questions, since she has obviously been through a very traumatic ordeal and do not want to post photos of her all over the internet, but we may need to contact her in order to locate the clinic since the hospital has failed to cooperate. To find her we must locate the child's birth or death certificate and follow the address listed there to the parent's residence. The certificates could be obtained through the RTI act, by connections at the hospital, in the government or any other source for public records.

This is an experiment in Open Source Journalism. I hope that bloggers and activists will be able to crack this case so that we can either say for sure that there was no foul play, and that this was a genetic accident, or hold people accountable for what could be a crime.

Please keep me informed on what you discover, but feel free to blog about your findings and publish in any medium you are comfortale with. Also, members of blog camp have begun to include a tecnoratti tag for "chennaioneeyedbaby" in their posts so we can track this story as it develops.

God speed.

Tags: chennaioneeyedbaby, cyclopamine, blogcamp

Hospital Report Says Cyclopamine Could be Culprit

An internal report from Kasturba Gandhi Medical Hospital on the birth of a one-eyed baby cited an experimental cancer drug as a possible cause for the disorder. Read the full story on the Wired News website.

The mother had gone childless for 6 years and had sought out the help of a fertility clinic to get pregnant.

In the course of my investigation I visited the hospital three times and was allowed to photograph the child as well as interview three high members of the hospital administration. The head of the pediatrics department, who attended the birth, went over the report with me, but did not allow me to retain a copy. In a section on possible causes for the child's disorder were only two references. 1) That it was a chromosomal disorder pre-existing in the parents, or, 2) that it was due to Cyclopamine--what I found out later was an experimental anti-cancer drug.

The author of the report was not present at our meeting, and the hospital staff present could not tell me how the drug came to be mentioned. Furthermore, despite my repeated requests, I was not allowed to meet with the report's author, nor would the hospital give me any information about the fertility clinic or what treatments the mother took during pregnancy. They also denied access to the mother for direct questioning.

There are many possible explanations for how the disorder could have occurred; yet the reference to the drug and fertility clinic in the hospital report needs further explanation. It is highly unusual to not collect a complete medical history from a patient--especially one who just gave birth to a child with a rare birth defect.

All drug companies I spoke with during my report said that there are currently no clinical trials being conducted on Cyclopamine in India, yet Michael Gray of Curis said that it is available through several medical distributors in the United States and Canada.

I hope to follow up on this report in the coming days.

Update on the Cyclopian Child

Earlier this week I posted a story about the one eyed child born here in Chennai. I have spent the last day meeting with government officials, doctors and hospital administrators trying to dig up more information about her. Yesterday I went to the hospital where she was born (a few kilometers from my house) and was allowed to see the child and take photos. I have a second meeting in the coming two hours and will first publish my update on Wired News, probably tomorrow.

What I can say now is that the defect probably is not a hereditary condition and other than her single eye and lack of a nose she appears healthy. She also responds to stimuli and, like any other infant, cries when disturbed. According to the research I was able to cull off Google, it seems that she has lived longer than any other child with a similar condition.

Sorry for the distant photo, I am saving my close ups for another publication.

**UPDATE: For all of you people who come in from a link and don't have time to look around for updates on the girl's status click here for a more recent post.

Cyclopian Child Born in Chennai

A one-eyed child suffering from a rare chromosomal disorder known as cyclopia was born in a hospital in Chennai earlier this week. The disorder occurs during pregnancy when the cells that constitute the forebrain fail to develop properly and fuse into a single eye. Instances of cyclopia are generally attributed to outside factors like ambient pollution, radiation, drugs and the introduction of other agents that can alter fetal development.

The pictures bare an eerie resemblance to images of Love Canal, a suburban community built on top of the most notorious toxic waste dump in New York State. While the small town was still populated, several children were born without eyes and cancer was hundreds of times the normal rate.

With waste burned openly in the streets, old MRI machines leaking radiation into local dumps, red alert toxic ratings for the city's air and water, and now one-eyed infants, Chennai is looking more like Love Canal every day.

(Photo originally from the Deccan Chronicle, sorry for the poor quality, they didin't post it online.)

8/7 UPDATE: I called Kasturba Gandhi Hospital for Women and Children to get more information about the child. Apparently it is now seven days old and the doctors believe that it may survive. They offered me a chance to see her in person, and I may follow up this post with more information later this week.

*** Several people have noted in the comments that MRI machines do not leak radiation, this is true. The people of Chennai will have to find their pollutants from other sources.