The World Cup and Research Ethics: Legacies
You may wonder why I’m blogging about the World Cup on the Research Ethics Blog. Call it an unfortunate coincidence arising out of a legacy of poor treatment towards those who are already socioeconomically disadvantaged.
Critics of the World Cup organizers are claiming that local poor vendors and entrepreneurs (known there as “hawkers”) in Soweto are being prevented from selling their wares and services or setting up their booths anywhere near to the events, within the official World Cup “zone”. With an unemployment rate of 40%, “hawking” wares and selling a wide variety of services is a deeply embedded part of the local culture. Before the games even began, promises were made to the locals that the World Cup would, in fact, benefit them in a number of ways. Local craftspeople would be able to sell their wares to the large crowds. Money generated from hosting the games would hopefully go into local projects which might include establishing and updating plumbing and roads in the surrounding areas. These promises have yet to come to fruition and many of the locals, according to one CBC report, are fearing that the World Cup will “parachute in” and leave the locals in the exact same situations that there were in before the games. Certainly not better off. Perhaps even worse off. Demoralized for sure. Still poor.
The report from CBC states that inside the World Cup areas, there are only “official” sponsors selling their wares. Large corporations, such as McDonald’s and Coca-Cola, dominate the markets, the stadium billboards, the food and drink booths and as a result, smaller local merchants aren’t able to even access the area around the stadiums. The perception, for many, is that the perceived benefits or opportunities, which might have arisen out of hosting the World Cup, simply aren’t going to happen. While the projected profit from the World Cup is estimated to be approximately 21 billion, much of that has been used to upgrade stadiums, enhance transportation to the stadiums and building a new international airport. All good things but not likely things that will, in any tangible way, really benefit the local craftspeople in Soweto. The CBC reporter notes that few to none of the local entrepreneurs could afford permits to work during the World Cup zone in stadiums meters from their own houses, in which they used to sell their wares before they were renovated for the event.
Here is the audio report from CBC (Sorry, you likely can only gain access to listen if you are in Canada): The World Cup Economy
This kind of “practice” isn’t new. The idea of richer Western countries using poorer countries in ways which will benefit only the rich and not those in the developing world is something that we’ve already seen in other contexts. Health research that is “exported” to the developing world is a prime example of this skewed harm/benefit situation. We often refer to this as “parachute research” In a now-famous 1996 Nigerian meningitis study, Pfizer researchers from the US came to Nigeria in the middle of an outbreak and left soon after (with their samples and data about the effectiveness of the drug Trovaflaxacin in treating bacterial meningitis) before the outbreak had even begun to resolve. They left behind inadequate records and local physicians had difficulty even determining which children had been diagnosed with meningitis. Few families even knew that their child had ever been enrolled in any kind of research study.
Sometimes this kind of problematic research hasn’t even been “exported” out of the country. In the Tuskegee Syphilis Study (1932-1972), nearly 400 poor illiterate African American migrant farm workers were used, without their informed consent, to study the natural course of the disease (without treatment) in black males. The study continued long after a cure was readily and cheaply available (which it was in the 1940s when penicillin was confirmed to be effective in treating syphilis).
There are few studies being conducted in developing countries on diseases and health conditions related to the complex social problems that are faced by those living there: poverty, famine, civil unrest, living with refugee status, economic unrest, sanctions. Many research studies being conducted in these countries are on what we might call first world diseases: obesity, elevated cholesterol, high blood pressure, etc. Sure, plenty of trials on HIV and AIDS were and are carried out in Africa (as of the end of 2008, there were 22.4 million persons in sub-Saharan Africa living with HIV and AIDS), but many of these trials have raised other contentious research ethics issues including standard of care and whether or not participants in trials in the developing world have a right to the same standard of care as a patient in an HIV clinic in Manhattan. We have, of course, supplanted the notion of local standard of care with “universal standard of care” but there are still marked differences between living with HIV in Botswana compared to living with HIV in Boston.
It may seem like a stretch to compare, even in an informal way, the World Cup and health research. They have significantly different goals. While health research should be aimed at benefiting persons, and improving health states, the World Cup has no such obligation. However, according to the CBC story, the hopes of the locals included the possibility to see even some marginal improvement in their daily lives by hosting the games in Soweto.
While the world grows ever smaller according to some, the discrepancy between rich and poor apparently continues to strive in a variety of contexts. In the medical labs and even now in the soccer stadiums.