The Rebecca Project has published a policy brief on non-consensual research in African countries, invoking the US town of Tuskegee in the title, where non-consensual research into syphilis saw many African Americans being infected with the disease and passing it on to their children and partners as a known (to the researchers) consequence of the program. Similar work was carried out in Guatemala, for which the US government has recently ‘apologised’.
Much of the research currently being carried out in African countries by US companies and US funded institutions is unethical and illegal. It results in innocent people being infected with diseases and affected by side-effects in ways that would be entirely unacceptable in Western countries, even in the US. Often, the people abused by these researchers are led to believe they are receiving routine medical care.
Sometimes informed consent is sought; sometimes it is given. But there is always a question mark over how well informed people can be when they may only have primary education or less, and education of very low quality, at that. It is in the interest of those recruiting participants to supply the numbers required, so the less participants know, the better for the researchers.
The Rebecca Project wishes to see these practices investigated and discussed at congressional hearings. They hope that this will lead to reforms in the institutions involved so that such abuses no longer occur, the protection of victims and the punishment of the perpetrators for these crimes against humanity.
David Gisselquist of Don’t Get Stuck With HIV has also written a comprehensive review of the literature showing massive levels of such unethical and illegal research, involving many tens of thousands of Africans. It would be impossible now to reverse the damage that has been done, for various reasons, including lack of care taken to record and report vital information on the victims. (A copy of Gisselquist’s review can be downloaded from the DGS site.) But these practices must stop.
Both the Rebecca Project brief and Gisselquist’s review bring home the fact that there are many people involved in carrying out these activities, scientists, policy experts, politicians and medical personnel, from rich countries as well as from developing countries. Many of the people involved are among the best informed and best educated in the business. If their education in ethical behavior is as seriously lacking as it appears to be, they should not have been involved in the first place.
If experiments on children, intentional or avoidable infection with an incurable and deadly disease, failure to obtain consent or to provide information that could influence consent and other excesses brought to light in these documents involved Jews, Romani people , homosexuals or other groups, instead of Africans, would they have been allowed to take place? And if they took place, would they be allowed to continue, as they are being allowed to in African countries right now?
Rebecca Project documents abuses that took place in a number of countries, as recently as the last few years, carried out by pharmaceutical multinationals, US health institutions, high profile donors such as the Gates and Rockefeller Foundations, international NGOs such as FHI and others. Often present is the notion of ‘population control’, something that is never far from the ideology of the various US parties involved. Reducing population is considered by many of these parties to be a viable development paradigm, although a lot of development theorists might classify it as being of mere historical interest.
Some of the incidents involved the use of the injectible hormonal contrecptive Depo Provera, mentioned on this blog on several occasions. Participants were told they were receiving routine health care. Another involved the use of the HIV drug Tenofovir, which has had quite a short but highly chequered history. They were not informed about the risks involved. Both drugs are still widely used, though questions have long been raised about many of their uses.
The list goes on, some of the drugs and pharmaecutical companies being well known, others not so well promoted in the mainstream press. To be fair, some of those who profited from the work, or who could have done so, raised objections. But they were mostly ignored until a lot of damage had been done. A few million in bribes and a few hundred thousand in ‘compensation’ is nothing to the multi-billion dollar pharmaceutical industry. They have survived many such crises and are likely to survive many more, unlike their victims. For the industry, being forced to address a fraction of the damage they do is only a very small cost, but the profits are massive.
The list of abuses is disgusting, including sterilization of women after getting consent through intimidation, pressure or cash, failing to report deaths and serious injuries and using babies and pregnant women as human subjects. One researcher reported being “unfairly assailed by pedantic saboteurs who could not grasp the necessary difference between U.S. safety standards and the more lenient standards that a country like Uganda deserved.”
Media attention can be way out of proportion when it comes to certain issues, such as some questionable findings about HIV medications or the ‘lack of evidence’ of any danger with using Depo Provera. But these kinds of systematic abuses by academics, political and industrial leaders and other powerful people which the Rebecca Project outline just seem to pass unnoticed by the proponents of ‘public interest’. Perhaps here, public interest is outweighed by financial interest? Or maybe the powerful are ‘us’ and Africans are just ‘them’, when it comes to the mainstream press?
There’s more. But I think the point is clear: there are many double standards involved in research, where all sorts of inhuman procedures can be carried out in African countries but not in the West. And abuses that take place in African countries are systematically covered up, if records are even available to conceal, lies are told, whistleblowers are discredited and public money goes into whatever supports the status quo, and shies away from anything remotely like change for the better.
This quite a powerful indictment on these doctors and institutions