PROGRAMME 1: Monday August 30th

THE GUINEA PIG KIDS

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Mike Thomson
Give us your views or personal experiences of the issues raised in the programme

Susan Lohan
All UK & International listeners should be aware that successive Irish Govts & Irish Society in general are at best determined to cover up scandals surrounding adoption in Ireland & at best are wholly indifferent to adopted people's experiences. 30 years after progressive legislation, granting access to adoption files, was enacted in the UK, adopted people in Ireland still have no hope of achieving parity with the rest of Irish people who may enquire about thir origins at will. Sometimes I truly despair

Gail Wells
I was very upset to hear such tests could be carried out on children, and the fact they are still being done to day. This programme needs to be put on television.

Carole Smith
Dear Mike Thomson, Congratulations on your programme, The Guinea Pig Kids, (broadcast 30th August, 2004 on Radio 4’s Document series), and for confronting and presenting to the public the extremely unpleasant issue of using human subjects – even babies and children – for experimentation for medical research, and profits from pharmaceutical products. It is also an unpalatable truth that, in addition to making financial profits, these same individuals and companies, very often win the acclaim of society for humanitarian awards, without public disclosure of the methods of their research. My own research into the use of humans for non-consensual experimentation has certainly vindicated your conclusions that this is not a subject we can safely relegate to the past. Nor are there adequate safeguards in the law for the prevention of abuse of human experimentation. There is much invoking of Ethical Codes when the subject of medical research and human experimentation arises, but a search for the actual code adduces a distinctly ambiguous situation. “…there are rigorous rules about experiments on humans.” (Material World, BBC Radio 4: Neuroscientific research into pain perception.) A request for details of the code fails to elicit a reply. The episode on The Wellcome Foundation, filmed in John Kampfner’s series, “Who Runs Britain?” shown on BBC 4, 22nd June, 2004 featured a discussion amongst the Committee of the Foundation with its Director, Dr Mark Walport who refers to the Code of Ethics safeguarding human subjects in medical research. The Director described the code in the interview as being equivalent to the Hippocratic oath for doctors. Another committee member then contributed the fact that the Hippocratic oath was no longer in fact obligatory for doctors. Dr Walport is responsible for overseeing £400 million in annual funding by the Wellcome Foundation for medical research. His reply to a request for the ethical guide for this research came through his policy adviser on Biomedical Ethics: “The code of ethics for science has not yet been formulated and is still being discussed by a committee (the Council for Science and Technology) of leading experts in various disciplines). Members include Dr Walport and Sir David King, Chief Scientific Adviser to HM Government and Head of the Office of Science and Technology. The idea would be to create an ethical framework for scientists which would be equivalent to the Hippocratic Oath for doctors. However, this is still at a preliminary stage of discussion.” Baroness Knight of Collingtree, who has sponsored the Patients’ Protection Bill in the House of Lords, has recently expressed concern that there are inadequate safeguards for protection in the wording of the Mental Incapacity Bill. Lord Warner, Minister for Health, found exaggerated, if not superfluous, Dame Knight’s suggestion that if such trials using the vulnerable were to be made feasible through inadequate protection, then this country could be compared to Nazi Germany. (Televised proceedings from the House of Lords, 19th May 2004.) With regard to the Code of Ethics from the most recent Paper from the Government about the Bill referred to above, and its provisions, the lack of clarity is a similar story: “Research on incapacitated will only be carried out if a research ethics committee agrees that the project is necessary…..Codes of practice will be prepared for that purpose.” In short, official euphemism and evasion prevail. There is every reason to fear that, in the absence of the realistic assessment of ambitious and over-zealous researchers, and the immense profits accruing to pharmaceutical products, this unregulated state of affairs will encourage the opportunistic exploitation of every ethical, let alone legal, loophole. We have now entered an age which, as a result of the lack of public disclosure of the techniques which have been developed to interfere with brain processes and human consciousness, leaves whole populations vulnerable to experiments which have the capac

Lisa Blakemore-Brown
I am a psychologist who is fully aware that childre have been used for experiments by Professors who, until recently, were untouchable. Their crimes against these children were made worse by the fact that they promoted child abuse theories to blame the parents for the side effects of the experiments - including vaccines.

Angela Thatcher
When I was 11 in 1957,I spent 2 or 3 days in the children's ward of Copthorne Hospital, in Shrewsbury. One morning 2 nurses came round and gave every on of us an injection. Nothing was said to any child and I can remember feeling uneasy about it at the time and have always wondered why they did it. Does this corrolate with anything you found?

Ranjit Choolun
This was a very worthwhile program. Thank you

Dr Derek Macallan
I was very disappointed in this programme because I felt that the presentation was very unbalanced. Although he raised a very important issue of immense concern, I thought Mike Thomson failed to address the more difficult issues in clinical research, particulalry in dealing with potentially vulnerable groups. He really only dealt with the issue of potential abuse but failed to consider issues of potential benefit, fully informed consent, and the need for an evidence base when choosing treatments. I was also surprised that I heard no reference to the recent EU directive on clinical trials which is a major piece of new legislation governing the practice of clinical trials.

Keith Roberts
Hi. The prog was good. My concern is that the BBC will not transmit such compelling stuff on it's main TV channels and knows that the audience at 8.0pm on R4 is small. So I suggest a prog on that very point including the current energy abyss and government blind eyes. KT Roberts

Robert Bell
We the public allow mad scientists to torture animals so why should we be surprised when they become bored of animals and turn on defenceless humans. You reap what you sow.

Carol Johnston
Great programme but what a terrible way to treat innocents. Whilst listening I could not help but draw parallels to Nazi Germany where scientists conducted horrific experiments on the Jews and eastern europeans. The subject of vaccination is one close to me as both my children reacted to the MMR vaccine. My son is now severely autistic. Could it be that administration of vaccines and drugs in the general population could be a form of drugs trial. What is wrong with trials involving consenting adults who are paid to take part in any trial. Targetting children is inhuman and anyone who conducts or condones such a trial is inhuman and should consider themselves on par with the scientists whose experiments were carried out in the name of the Third Reich! What I found particularly disturbing is the attitude propogated by the drugs companies towards Africa and developing countries. Rather than use animals through fear of animal-rights activists they use innocent children in a third world country. This is a disgusting disregard for the rights of these African children. Do they consider these African children to be less than animals? As more and more drugs and vaccines are developed they are looking to test in vulnerable communities. Has none of those conducting these trials heard of human rights? I cannot put here what I think of these individuals. As long as a profit and the almighty dollar is attained the human casualties and suffering is a price worth paying. It seems vaccines are responsible for causing more problems than they solve! If they need to test these vaccines why not have employees of the drugs companies themselves take part in trials. I am sure worldwide -of course they should get a healthy bonus for taking part - which is more than these children got or would get!

nic howes
Exactly 3 years ago there was a 'Document' broadcast on the Lynmouth flood of 1952. After the prog. the announcer said that full results of Exmoor sediment analysis were still awaited. Was the analysis ever completed and were silver and iodine both found in the same sample?

p jordan
Why did the programme not confront the UK authorities who had destroyed their records of tests on vulnerable children ?. Presumably both the children and scientists involved in these tests are still alive - why were they not tracked down and interviewed ??. The programme appeared, to me, to tiptoe around the UK activity in this area - was it afraid to upset the powerful government/industries involved ??. Ireland, in the fifties had no phamaceutical industry so it was presumably a softer option for the programme. Reply invited.

Sara Ball
As a teacher of KS5 Health and Care Studies, I will found the case study of considerable benefit to my 6th form students. Thank you

Kathy Ferguson
Thank god someone has now taken this up. I am still wondering what Drugs have been on me

Phyllis Maiden
I have not yet listened to your programme and frankly I will listen with dreaded fascination. I was brought up in care in Shropshire in the 1950's. To summarise, I had a dreadful childhood, even with long term foster parents in Shropshire. I have tried to get access to my file, but I was told that all children's records were destroyed in the 1960's. However, they did send me a brief resume of my life which they had stored on an index card. I still feel they have the files and are not telling the truth. I now wonder if we were used for drug experimentation as I was looked after under the auspices of the Church.

Dr Stuart Clyens
The persons responsible for this outrage should be prosecuted and hopefully jailed for a very, very long time.

James Howlett
Very good subject and have to say that Dr Michael Wilks' fears are already happening in the compounds of Lusaka, Zambia. Trials are being carried out on children, I saw one girl with HIV and TB. 4 years old and she had never had a pain free day in her life. She was on a trial drug which could have been a placebo, but the hospital gave her no pain killers to help her. She died 2 months after I saw her.

Julia
I am not suprised to hear that Children were used in experiments. I was born in 1948 and raped at the age of five that is when me and my two brothers were taken in to care. I was brought up in a childrens home (a Convent) and every day I took drugs to put me to sleep and drugs to wake me up in the morning I always had earache, and nearly every morning had to be taken to the bathroom as I couldn't open my eyes as the they were shut tight with gunk, I ahve always been told that the visit to the childrens hospital was for check ups for epilepsy. I used to go to Sheffield Childrens hospital.

Susan
Well it appears that our scientists have not been as guilty of speciesism as we once thought. Philosophers like Peter Singer have accused scientists of this because they used animals rather than people. Why then are we so horrified when we find out scientists have actually done what philosopher's have been advising them to do. It must be the remnants of the old Christian idea of mankind being made in the image of God and therefore being special that we just cannot shake off.

Dr J. Emily Harrop
I listened to the ‘Children as Guinea Pigs’ program on Monday night and I was horrified at the lack of understanding, sensationalisation, and bias point of view put forward by Mike Thompson. I am one three Paediatricians training in Paediatric Clinical Pharmacology in the UK, and I firmly believe that children have a basic human right to safe and effective medication (in the same way as adults) and that in some cases this will inevitably involve the product being tested in their own age group. The Health Minister, Lord Warner, released a report earlier this month (17th Aug – available on Dept of Health web site), specifically encouraging the development of medicines designed for use in children. In this report he highlights the fact that children and adults in many cases respond very differently to medicines and that a treatment which is safe and effective in an adult may not even be suitable for a child. As a result of the report, our government has committed itself to : -Strongly encourage drug companies to provide much better paediatric clinical trial data for new and current medicines -Provide better information on the use of medicines in patient information leaflets -Publish for the first time a separate British National Formulary for Children, and -Invest part of the additional £100 million announced in the healthcare budget to promote research into medicines for children through new research networks which will be coordinated by the UK Clinical Research Collaboration. The current situation, in which drug doses for children are of ten rough-guessed by simply dividing the adult dose in proportion to the weight of the child, is quite frankly dangerous, with many children being under or over medicated, and in some cases receiving a drug which has not even been proven to be effective in their age group. All research carried out in children is subject to rigorous ethical and scientific review before being conducted, and no research is EVER carried out in children for the benefit of adults. Indeed, any research which can feasibly be done in adults, is carried out prior to introducing the particular compound into younger ages groups. The program’s information about legislation in the USA was also out of date. It was the situation at one time that patent extensions were offered in exchange for paediatric trial data. However, the drugs in question had to be of some proven benefit to the child population. Following the success of this system, the FDA now requires drug companies to provide paediatric data on ALL new compounds or to apply for a waiver (which would imply that the drug was of no possible benefit to a child). I would like to end with a few specific examples. Firstly, Acute Lymphoblastic Leukaemia in children, the cure rate is now over 90%, purely as a result of well conducted clinical trials relating to small alterations in doses, and to the use of subtly different compounds – this must surely be in the interest of children? The program spoke at length about HIV treatment, with particular reference to children being given ‘different doses’. Without this sort of research, we would have no kinetic data for these drugs, which are handled very differently by the bodies of young children (who have very different livers and kidneys among very many other things). A group in Paris has recently shown that in fact infants break down certain HIV drugs much more quickly than adults, meaning that if the dose was calculated on weight alone, then they would be significantly under medicated and therefore at higher risk of dying sooner of their disease. Portraying researchers as evil and collaborations as conspiracies does nothing to promote the continued practice of ethical drug trials in children. It strikes me as very irresponsible to broadcast theses views without a balanced counter argument, as any parent hearing the program would be very unlikely to consider consenting to take part in a clinical trial, which may have been of considerable benefit to their child and to society.

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