Rights and not so rights

Tuesday, July 8, 2008

So yesterday was a day full of accomplishment. We got up very early, a huge accomplishment if you know me, and wrote a flurry of emails to different people around the world for some more information about study materials. Specifically, we might be able to get a machine called a Niton XLp 3 which analyzes soil for lead, marks it's gps location, connects to a laptop via bluetooth, and constructs a grid of all the samples...basically half the work. I might be able to get one in South Africa when I go visit my family on Thursday... don't worry, the blog will continue (I know you're all relieved).

After the emails, we rushed back to St. Stephen's Hospital and took the MU medical students out to lunch (7 people ate big meals, it cost about $4) and then walked over to St. Stephen's Primary School, which happens to be next to St. Stephen's Church... all affiliated. There we had a focus group. I don't know what everyone knows about focus groups so here comes the long winded explanation; nerds can skip to the next paragraph. A focus group is a quarum of people from different walks of life put together in a room to represent a community or target audience. They answer questions intended for the community and basically help researchers flesh out good questions from bad ones, important information from the not so important, etc.

So this focus group helped us go through all of the information in the study documents and discuss it’s cultural applicability and clarity. I am going to go through the issues from least to most interesting (to me).

1. Risks and Inconveniences

In this section of the consent document we discuss the possible negative outcomes that could happen to study participants; perhaps getting the venous sample could cause an infection, bruise, or some pain, or maybe getting identified with a high lead level could be stigmatizing to the child. However, the focus group said that when muzungus talk about risks they mean small things, but when Mugandas talk about risks, they mean broken bones, death, and blowing something up. They said that they don’t want to be told about risks when there are none. They said instead we should write “This might happen to you.” Like I said, least interesting first.

2. Privacy

I know that many of you have either heard of or perhaps signed a HIPPA document explaining that all of your health information is safe and that nobody besides those treating you will know any of your private information. Well, the largest section on the consent form, mostly because it was made in the USA, was the privacy section. People in the focus group laughed at this section. They explained that they all lived in the same community and everyone takes care of everyone else, why should other people not know? How can they help if they don’t know something is wrong? People have no privacy here.

But now that I think of it, they are wrong. People do have privacy and know that it matters. You see, when someone signs up for an HIV test, nobody else finds out about it. And I don’t know how ready everyone is to share that information. Though, when we visited a lab at a hospital which will remain anonymous, they showed up the monthly record of HIV test results. Maybe they thought that because we were medical students, it was alright to show us other peoples’ results.

3. Rights

“We don’t have rights.” Was that clear? When we were discussing the fact that signing the consent form does not make them sign away their legal rights, they said they had no rights. When I pressed them for more information, they said that there were actually legal rights, but in order to get them you have to be well connected and rich. So basically, regular people, those without any major connections or wealth, in Uganda recognize that they have no attainable rights… and they don’t have the resources to fight for them.

At MSSM we had an exercise during the last 2 weeks of medical school where we discussed rights. We were asked what rights we believe that we have. We listed things like the right to vote, fair trial, privacy, legal protection and action, etc. Everything good Americans know they have in their arsenal. When we discussed what people in the third world believed should be rights, we found out that they were more focused on the right to food, healthcare, and other basics. We take those things for granted. We don’t really think about those things as rights as much as we see them as things that are available (to most, if not all).