If some among members of the scientific community have created a precedent and have show that they are capable of engaging in such dubious moves, we cannot and must not relax our guard . .... Who knows what some of this so called scientist working for the CDC are capable of doing on unsuspecting African Villagers... for the price of chicken and Ugali!!
Matek
of the se that Beings, acuse have taken
In a message dated 12/23/2003 10:16:08 AM Eastern Standard Time, [EMAIL PROTECTED] writes:
The human guinea pigs of Rarieda
By Douglas Okwatch, Otsieno Namwaya and Anderson Ojwangâ
Monday, December 22, 2003
http://www.eastandard.net/issue/issue22120301.htm
To get to this remote village, the visitor must have used a guide âand a four-wheel drive. For a rural population, living many miles from Kisumu â a city on the shores of Lake Victoria â he must have been that rare visitor who always brought along lots of goodies. Then, he would vanish as quickly as he came.
He was a white man and the year was 1984. Indeed, the visitor, an American, according to accounts of the villagers did bring some goodies. But, unlike other visitors, he didnât leave quickly.
And, even when he finally did leave they did not see the last of him â or, to be precise, his kind.
More visitors would later follow to begin â on a large scale â what, it later became apparent, were scientific studies on human populations. Within a short time, the Kenya Medical Research Institute (Kemri) and Americaâs Center for Disease Control (CDC) had recruited hundreds of locals into the research turning them â some unknowingly, into human guinea pigs.
In week long investigations, residents told us they have always been informed the research is on malaria control, and they have for a long time believed this â albeit grudgingly.
However, it is pertinent to point out that research ethically done on humans delivers life-saving, pertinent insight into human health problems and solutions. It should also never be forgotten, for example, that animal experiments repeatedly found aspirin fatal and thalidomide safe, and routinely fail to yield reliable results.
Yet, something not quite right regarding research protocol and ethics is happening in Kisumu, Siaya and Bondo Districts.
Foremost, it emerged during our investigations that other than Malaria, CDC and Kemri have for nearly two decades now, been carrying out one research after another on infectious diseases, including HIV/Aids, but the people who they have been using as guinea pigs have never been told the full scope of the research to enable them make informed consent.
They have also never been told of the findings of the research, leaving room for speculation among the locals that the United States could be carrying out trials on a wide range of toxic drugs, or even using the locals for some kind study without their consent.
According to accounts even when the research is on HIV/Aids, anaemic children or the so-called HIV/Aids opportunistic infections, which include Malaria, the villagers have always erroneously been informed by the researchers in the field that it is all about malaria. The residents also accuse some CDC researchers of engaging in deception wherever they suspect there is bound to be resistance on a specific research project.
In 1996, the Walter Reed Institute of Research, working with CDC, provided tea on a daily basis and later ugali and chicken to the people they had identified as their research sample for a three month study on a drug called Malarone in Lwak. While it is not clear whether this was used by researchers as an inducement or whether it was simply part of the research requirement, most of the villagers say they participated simply so as to partake of the food. "I did not know what the research was about. Most of us went there just to take the tea and eat the chicken," said a woman who identified herself only as Nyaseme.
Nyasemeâs husband refused to take part in the research because he demanded to be told what it was all about. On the other hand, the researchers in the Walter Reed project, who tested blood from various residents before selecting their research sample, had a hard time when they turned away some of them on account of their blood being infected. Most of those who were turned away have reportedly since died, but so also are those who were used in the research. Some residents believe there is a connection between the deaths and this research as even the health of those who are still alive has truly deteriorated. The Walter Reed researchers have since completed their work in Lwak and are undertaking a similar one in Kombewa, Kisumu.
Other research teams are now in Lwak and other parts of Asembo, Rarieda Division, while some have been running around for decades, something that is now raising curiosity. There are individuals who have been under close scientific surveillance since 1984 even before they started having families, and then the surveillance was quickly broadened to include their children as soon as they started having them. "All my children and myself are being used in research by CDC . I am visited here at least once every month by different scientists who take either my blood or urine," says a man, who has since 1984 only been told the research is about Malaria.
Apparently, the man and his two brothers have been at the centre of all the controversial researches being undertaken. His elder brother, he says, may have declined to take part in the protracted research that he has been part of, but just two weeks ago he was approached by people who said they were working for CDC and given a tacit message. "Your 13 year old son has been identified for our HIV/Aids research and we shall be coming back for him."
To him, the matter of his consent did not appear to be significant to the CDC researchers, but he says he will not accept his very young son to be used for a project. For one, he can not understand how a 13 year old can be used for HIV research and, even if that was to be the case, he cannot just be ordered around the way it is being done. As it turned out, this is the first case in the village in which a resident has been informed prior to the research that it will be about HIV/Aids.
Further investigations and inquiries in Lwak village revealed that there are various men and women who have been asked to take part in an upcoming research project, but they have no idea it has anything to do with HIV/Aids. Other sources said that CDC/Kemri plans to undertake a research on how people with HIV/Aids respond to different combinations of Anti-Retrovirals (ARVs).
Given that ARVs equally have far reaching side effects, sometimes even fatal, it is curious that the residents have not just given consent but have also not been made to understand why they are being used in the research (whether they are positive or not) and what implications it could have on their health. Other residents are fearing, on the basis of what they say they have been told in confidence by "some people who work with government", that they are being used in either the development or testing of an Aids vaccine without being told so.
If, for instance, it turns out that those chosen in the ARV research are indeed HIV positive, the question would be how CDC came to know of their status when they themselves have no idea. But, when asked this question, the residents themselves thought it would be surprising. For some years ago, CDC conducted a thorough demographic survey of the region which enables them to know not only the size of the population but also the health status of the residents. In other words, CDC could be having detailed information on the sero-status, or simply HIV status, of Rarieda people that has not been brought to their attention.
Independent researchers â who have been labelled cynics by their mainstream counterparts â reckon, for instance that Kemri and CDCâs estimates of prevalence of malaria and other infectious diseases in Siaya and Kisumu Districts are alarmingly high, and could, in their view, be a deliberate and calculated ploy to justify carrying out unethical research on humans in the area.
To illustrate their doubts, one argued that Aids cases in some parts of Africa, for instance, have never been known to correspond to HIV prevalence because HIV testing on the continent has produced alarmingly high rates of false positive results in a large proportion of tested populations.
Consequently, estimates of Aids cases have, in some cases, been based instead on a list of clinical symptoms that include persistent coughing, high fever, weight loss, and chronic diarrhea.
These criteria for Aids diagnosis in African cohort studies overlap considerably with the symptoms of such endemic diseases as dysentery, tuberculosis, cholera and malaria.
This is why a growing number of independent scientists and researchers have criticized this premise and insist that addressing structural poverty and unhealthy living conditions â not behavior modification schemes â constitutes an appropriate patient-centered approach to achieve better health care.
But most importantly, the nebulous linkage of HIV to a complex of widespread symptoms in Siaya and Kisumu where Kemri and CDC are carrying out their research has been greeted with justifiable skepticism by many locals for another reason: they fear that claims of a pandemic will become an excuse for using local populations as a laboratory for unwarranted and unregulated vaccine trials or for testing powerful cytotoxic drugs, using them as guinea pigs.
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Why study is causing so much anger
By Otsieno Namwaya
December 22, 2003
http://www.eastandard.net/issue/issue22120305.htm
Even if the research by the Centre for Disease Control in Siaya was noble, there are a number of things that could easily raise eyebrows.
Just because the kind of infectious diseases such as Malaria, HIV/Aids, Diarrhoea and anaemia that CDC and Kemri have been understood to be interested in are widespread in many other parts of the country, it has only been a matter of conjecture as to why, for close to two decades now, researchers maintained such a keen interest only in Rarieda and some parts of Kisumu.
But an official of CDC in Lwak, Jael Tata, explains that this is because the area has the highest death rates in the country across all ages and they are interested in knowing why.
She says that, in their research, they have established that part of the problem is lack of good water, but it also has to do with high prevalence of malaria, anaemia, diarrhoea and Aids, which she mentions only reluctantly.
Yet from the way things are, if such an explanation were to be offered to the residents, it would take some coercion for it to be accepted at face value. The question that is now upper most in the minds of residents is why they have never been told the real objective of the research or even given the research findings.
In the official documents, the CDC/Kemri collaboration is said to be aiming at researching on Malaria, bilharzia, HIV infection, diarrhoea diseases and other emerging infectious diseases of public health importance.
Perhaps in return, CDC offers to train Kenyan scientists at the masters, doctoral and post doctoral levels as well as advice the Kenyan government on issues related to control of malaria, bilharzia and HIV infection.
In 1998, for instance, a number of research projects on HIV and malaria were initiated. One research manual describes the project as "a hospital based study to determine whether HIV-positive pregnant women with placental malaria infection are more likely to transmit HIV to their infants and whether malaria induces progression of HIV-related immunsuppression in infants during the first year of life."
Another proposal for CDC research in the area describes it as a study of the immune responses to infection with bilharzia in persons with HIV infection, as well as the efficacy of treatment." From this, it is evident that most of the CDC researches, whether malarial or otherwise, are closely linked to HIV/Aids.
That CDC/Kemri have rarely informed the subjects is, therefore, a matter that is bound to raise serious ethical questions. That CDC has in other cases found it only necessary to lure the residents into the project with food rather than offer proper information on their activities so that they could make informed consent does not help their case either.
But the residents are themselves more concerned with practical situations they have witnessed on the ground. In one case, for instance, a man says his brother was used in one of the several on-going researches in the area.
The study lasted for three months within which period the subjects were given two injections and a total of 98 capsules, one per day. The subject is said to have fallen seriously ill in the middle of the research and had to be rushed to New Nyanza General Hospital in Kisumu where he remained admitted for days.
"When my brother came back from hospital, he grew extraordinarily fat (puffed up) and remained like that months after the research. But two years later, he fell very ill again and died." This particular incident has made the family very concerned that could be his death was in some way linked to the research.
But the woes of the dead manâs brother do not just seem to have ended with his (brotherâs) death. His elder sibling, the one who is convinced that there is something sinister in this research, was only a few weeks ago approached once more by CDC officials over his 13-year-old son. But unlike the previous cases, he was told that his son is to be used in an HIV/Aids research.
The problem is that no one has bothered to explain to him whether his son was chosen because he is HIV positive at that early age or not, and even if so, what kind of Aids research is to be undertaken on him. Although he says he will chase the CDC officials away when they come back as they have promised, he is still not sure what the consequences of such an action would be since they have been made to understand that CDC is fully backed by the Government.
The dilemma in which this family finds itself is underscored by the fact that one of them has been under scientific surveillance by CDC since 1984, but has never been told what is being looked for. He has given out numerous blood and urine samples and receives researchers every month but has no clue what their findings have been.
There are numerous such families in Rarieda and parts of Kisumu that are being haunted by the uncanny feeling that they could be part of a research project trying to establish something they do not know anything about.
To them, Aids is not even the idea, but something perhaps more elaborate between the Kenyan and American governments. For at one time, say some of the women who participated in the research, the researchers were eager not just to conceal the findings and objectives of their work but also their identity.
In the 1996 Walter Reed research, for example, those being used in the project were given meal cards, which contained details of each subject and the name of the project but had no name or address of the group conducting the research. Some residents believe this was a clever way of avoiding liability in case something went wrong in the research.
