Debate: AIDS research on humans

By Freeman Chari

I would have loved to avoid this topic because of the controversy, emotions and other implications that may be involved. Nevertheless; because of the interest that this topic generates I think it would be necessary to bring it to the fore.

There are two groups of people; one that supports AIDS research on humans and one that doesnt. Those who do not support may further be classified into those who do not support because they just do not feel that researches should be done on humans and those who feel that Africa is being exploited by researchers from developed world.

Those who just do not feel that researches should be done using human subjects mainly derive their objections from religious or moral beliefs. Those who feel that Africa is being exploited derive their reasoning from different sources; some from unpleasant historical events, some from ethical considerations and some from political opinion.

I am neither a pastor nor am I a traditional healer so I am not going to tackle the religious angle but I will try to touch other aspects related to medical research with a particular emphasis on HIV.

Let us begin with those who object to HIV-research in Africa because of unpleasant historical events. So many events have taken place across the worlds which make people suspicious of medical research. A few examples are given below:

The Tuskegee Syphilis Study

This study was aimed at finding out the natural progression of syphilis in humans. It was conducted at Tuskegee by the United States Public Health Services from 1932 up to 1972. About 400 black men with syphilis were enrolled without their consent.

These men were from the rural setting of Tuskegee where there was high prevalence of syphilis and limited health delivery. These people would be reviewed sporadically but were never given treatment. Even 10 years later; when penicillin was discovered to be effective against syphilis the researchers continued without giving them antibiotics.

It was only in 1972 that the study was exposed. By this time, 28 men had died of syphilis, 100 others were dead due to syphilis related complications, at least 40 wives had been infected and 19 children had contracted the disease at birth.

The Ugandan Tuskegee

This study was carried out in about 10 clusters of rural villages in Uganda. The investigators wanted to find out more about the risk factors associated with heterosexual transmission of HIV-1. To achieve this, the investigators gave the community an intermittent supply of antibiotics against STI but did nothing about HIV-1.

These investigators would carry out surveys on the villages at 10-month intervals. What it entails was that for 30 months several hundred people with HIV infection were monitored but not treated.

Even when the investigators found discordant couples (where one partner is positive and the other negative) they would not inform the other partner but left it to the positive partner to do it if he or she wanted. Furthermore, those with other Sexually Transmitted Infections were left to seek their own treatment.

There are many other events like the Trovan Controversy in Nigeria, the Nazi experiments during the Second World War, The Jewish Chronic Diseases Hospital Study.

So are these people not justified in opposing HIV-research on humans?

What these unfortunate incidences show us is that; if scientific research goes unchecked some researchers can perform horrendous acts without regard to human life. That is why today the scientific world has sought to moderate nuclear research, medical research and other researches.

Imagine if it was free for all, by now researchers would have started cloning people and producing men with lion faces!

We cannot doubt however the importance of medical research. Many of the advanced medical interventions we have today came along due to accumulation of scientific knowledge mainly through research.

So, those who are for medical research on humans feel that although there are possibilities of exploitation and manipulation; such challenges should not let us forfeit the chance to accumulate helpful knowledge.

Rather, people should continue to gather scientific knowledge but at the same time strengthening the checks and balances against exploitation and unethical practices.

It is these checks and balances that have become a subject of most debates about the ethical considerations of medical research on humans. When does medical research become exploitative?

There are many cases that constitute exploitation. When a researcher comes to Africa and decides to test a drug for a certain disease that is not common in Africa; that definitely constitutes exploitation.

When a research is of no benefit to the people who are being used as subjects then that becomes exploitation. When a research is done on a human subject without him knowing or giving consent (agreeing), also constitutes exploitation.

When a research is intended to cause untold suffering on the subject, then that is exploitation. When a research gives a standard of care that is less than that which is the best in the world is also considered as exploitation.

First and foremost, a research should be immediately beneficial to the people from which it is being carried out. The fairness of benefits to the host community depends on the burdens and risks of the research and also on extend to which other people not involved in the research are going to benefit from the research.

For example, if HIV vaccine is to be tested in Gutu Growth Point, although people from Gutu would also benefit from a successful vaccine, the whole world stands to benefit from that vaccine.

Given the risk that the Gutu society would have put themselves in, they should also benefit more from the study than just immediate treatment for those who get infected. Long term benefits like clinics, hospitals, schools should therefore be insisted upon.

Secondly, the host community should insist on worldwide best care. Meaning that, all researches should utilize the best methods in the world. For example; if the best care in the world for HIV infection is by use of drug X, then it would be unethical for a researcher to use a drug Z whose efficacy may be below that of X. This is a very controversial requirement, because of many reasons. Lets get some tricky scenarios:

1) Imagine a researcher who wishes to study the side effects of a certain ARV drug which could cost $1 when the worlds best drug costs $50. Given the envisaged benefit to our impoverished continent, wouldnt it be rational to allow the research if it satisfies other ethical requirements?

2) Imagine a situation where our government still uses a drug X to treat a certain disease. Would it be unethically for a researcher to come from United States and carry out a research using that drug even though in USA it would no longer be considered as the best?

To help us answer the question of whether we should allow medical researches in Africa. There are points that we need to consider. Firstly; all the treatments and methods of care that we are utilizing today are products of cumulative scientific knowledge. Scientists are continuously building on the knowledge gained.

A few years ago HIV patients used to take about three tablets at a go, but these days they can take just one. This is because of research and accrual of knowledge. So without research, there is little hope for us to succeed. Even if a research is done on an animal and it is successful, there is no guarantee that if used on a human being that drug would be successful.

Secondly, if we do not agree to HIV research on our continent, wouldnt we be shooting ourselves on the head? Remember, we are the worst affected and any drug that would emerge would definitely be of more help to us than to anybody else.

This however does not mean that we should be used as guinea pigs. Our obligation is to ensure that whoever wants to conduct a research on African soil; whether he is African or not should first of all satisfy certain comprehensive requirements that make the research safe and ethical.

This responsibility does not lie only on medical research and ethics boards in our respective countries but should be cascaded down to the communities. There are cases where political figures may allow certain researches to go ahead because such researches may be advantageous to them. For example, if a researcher decides to build a clinic in return for permission to carry out a drug trial.

Communities should be sensitized to challenge such researches and I believe there should be legislations in place to allow interested parties access to research documents before a research commences.

This is just my view, let me hear what you think!

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