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Risks vs Rewards

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A of people living with HIV in the United Kingdom found that more than half would participate in a clinical study to develop a cure for HIV, despite this posing a risk to their health.

There is currently no cure for HIV. But a number of around the world are exploring new approaches to curing the disease. There have also been a handful of where individuals achieved a type of HIV 鈥渞emission鈥� following medical intervention.

But participating in clinical trials that could take researchers closer to a cure for HIV comes with risks. In some cases, participants with HIV may be required to for a period of time. This may increase their and can potentially lead to drug resistance.

is central to the long-term management of HIV. It helps prevent damage to the body鈥檚 immune system, ensuring people with HIV can remain well and live a normal life. It also reduces the risk of transmitting the virus to others.

will generally require blood testing and can involve invasive procedures such as tissue biopsies. Participants may also experience side effects from the drugs or treatments being trialled.

Along with these risks, participating in an HIV cure trial offers few benefits. Most trials are in the early, experimental, phases. Participation will offer no therapeutic advantage and the likelihood of an available cure is still .

In most countries,including Australia and the United Kingdom, there are strict on offering payment for clinical trial participation, so there are usually no financial incentives.

So why would someone choose to do this?

For many people, it is simple altruism. The , as well as a , found a desire to help others was the primary factor motivating people鈥檚 willingness to participate in HIV cure trials.

A cure for HIV is still a long way away.
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For some, this was about making greater meaning out of their own experience of HIV by contributing to scientific knowledge and improving options for future generations.

Science and medicine relies on altruism in a number of areas. Altruism is to the safety and success of blood donation programs in many countries. Similarly, many of new medicines or therapeutic interventions require altruistic participation of people who will not benefit personally from the study.

Ethical concerns about the reliance on are complex and contested.

On one hand, altruistic participation is desirable. People who have no medical or social need to participate in a trial are probably less vulnerable than those who participate for therapeutic reasons 鈥� such as to obtain access to a drug or treatment regime that would otherwise be unavailable to them.

On the other hand, altruistic participation generally infers that the trial offers little therapeutic benefit and may not be in a participant鈥檚 best medical interests. In this case, researchers have an ethical responsibility to probe further into the reasons why people choose to enrol.

suggest it鈥檚 rare for people to opt in to a clinical trial for altruistic reasons alone. Often co-existing personal factors motivate their interest, such as having a friend or family member affected by the illness being studied.

This is where it becomes more complex for HIV cure studies. The very possibility of an HIV cure is inevitably personal for someone living with HIV. It is not difficult to imagine that a person volunteering to participate in an HIV cure study might be motivated by a mix of altruism and a sense of hope that a cure might become available for them.

This does not mean that this person is incapable of rationally comprehending the risks and benefits involved in a trial 鈥� or that being overly optimistic about where a study will lead is a reason to exclude someone.

But ethically, the process of ensuring involves pre-empting possible areas of vulnerability. In some cases, optimism and hope for a cure may lead someone to underestimate their personal risk. This is something clinical researchers need to be cognisant of.

Researchers also need to consider the , including the role that media reporting on HIV cure research plays in engendering a realistic (or unrealistic) sense of optimism among communities affected by HIV.

It鈥檚 likely that HIV cure research will continue gaining momentum in coming years. This is clearly not research that exists only in a lab. It鈥檚 important that people living with HIV, community advocates and social researchers work closely with the scientific community to better understand the social and ethical implications of this new phase of cure research.

is Research Fellow at Australian Research Centre in Sex, Health and Society at .

This article was originally published on .
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