Risks vs rewards: why people with HIV volunteer for 'cure' research

A recent survey 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 clinical trials around the world are exploring new approaches to curing the disease. There have also been a handful of highly publicised cases where individuals achieved a type of HIV “remission” 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 stop using antiretroviral treatment for a period of time. This may increase their viral load and can potentially lead to drug resistance.

Antiretroviral treatment is central to the long-term management of HIV. It helps prevent damage to the body’s 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.

Participation in a HIV cure trial 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 a long way away.

In most countries,including Australia and the United Kingdom, there are strict guidelines 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 UK study, as well as a similar study in the United States, found a desire to help others was the primary factor motivating people’s willingness to participate in HIV cure trials.

A cure for HIV is still a long way away.Benny Lin/Flickr, CC BY-NC

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 central to the safety and success of blood donation programs in many countries. Similarly, many clinical trials 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 altruism for clinical research 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 – 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’s best medical interests. In this case, researchers have an ethical responsibility to probe further into the reasons why people choose to enrol.

Studies on altruism suggest it’s 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 – or that being overly optimistic about where a study will lead is a reason to exclude someone.

But ethically, the process of ensuring informed consent of trial participants 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 cultural context, 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’s likely that HIV cure research will continue gaining momentum in coming years. This is clearly not research that exists only in a lab. It’s 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.

Jennifer Power has previously received funding from the Australian Research Council, VicHealth, Relationships Australia and ACON. She currently works on a project funded by the Australian Department of Health.