For advocates, social science is an important component of effective cure research, one that is often undervalued. Whereas biomedical researchers investigate and develop interventions, and establish that they work in optimal conditions, social scientists make sure these interventions are effective in the real world and are embraced by affected communities.
The use of language, even a single word, poses an ethical conundrum in clinical research (see “Speaking the same language”). Take the word “cure.” It may seem like a word most people can agree upon, but that’s simply not true. What one biomedical researcher thinks of as a cure can be very different from what a person living with HIV thinks. This disparity can inform who participates in clinical trials; some people might consent to participation underestimating risks while another might decline by overestimating them. The same is true of possible future cures and how they’re delivered.
Certainly, biomedical work is at the core of treatment and cure research, but the benefits of this work are amplified and risks mitigated when done in tandem with social scientists and community representatives.
Funders now have a chance to demonstrate forward-looking leadership with grants that foster collaboration between social and biomedical scientists focused on cure. If we fail to integrate social science into HIV cure-related clinical trials, it will be people with HIV who most suffer the consequences of missed opportunities.
Efficacy without effectiveness doesn’t cut it. But meaningful, systemic change to the scientific research process will require additional funding of social research that elevates the least represented communities.
A few of these studies have been completed or are underway (see the table Current Candidate Immune-based Therapies), and more are in the pipeline. Rather than a catalogue of research, we compiled a catalogue of unanswered questions (see “HIV cure social science 2.0” below).
Assistant Professor at the University of North Carolina Gillings School of Global Public Health
What sparked your professional and personal interest in HIV cure social science research?
I started my research work in the HIV prevention field. I worked in nine African countries—mostly in Mozambique—developing clinical research capacity for future HIV vaccine trials. In HIV prevention research, there was already a rich tradition for biomedically-relevant social sciences and community engagement.
When I started working in HIV cure research, I noticed the lack of research in this area. Most of the HIV cure research field is dominated by biomedical research, with little attention paid to the acceptability of potentially high-risk interventions.
I was interested in factors that would make the implementation of HIV cure research both effective and ethical, and in the patient and community perceptions of this complex body of science.
We’ve studied people’s willingness to participate in HIV cure studies, but I suspect there are many unanswered questions. Which are most pressing?
We want to better understand what motivates people living with HIV who are doing well on treatment to be willing to undergo risk for a specific HIV cure research strategy, and what is the risk threshold for these various interventions. Some risks are predictable, whether they are great or small, while others are merely possible in the long term.
We also still have a lot of unanswered questions about what makes people willing to undergo treatment interruptions.
Sometimes ethicists don’t concern themselves with the direct application of an ethical principle in the real world—for instance, they dream up thought exercises to make things simple. But at the pace that cure research is going, how should we think about ethical principles to make sure trials are as safe as possible?
This is a great question that relates to the intersection of social sciences and ethics research. Social scientists are interested in studying humans and their social relationships. Theoretical ethicists more generally study aspects of human culture and its values. As we move forward, I think we need ethics to be less philosophically-inclined, and more grounded in the reality of actual HIV cure studies here in the U.S.
Most HIV cure studies right now will benefit science, but not the physical health of the study participants. Some participants derive tremendous psychological benefits from participating in studies, and that must be better understood. The concept of non-maleficence, which is about doing the least harm possible, is paramount in HIV cure-related research. We must try to minimize the risks as much as possible, while trying to advance this important body of research.
My fear is that the field of HIV cure research will go too far without adequate social sciences and applied ethics research to understand the non-medical harms. In fact, I do not understand why we are not asking these questions concurrently with the biomedical science for the most part.
What will lead the way to better coordination and collaboration between the biomedical and social sciences?
The patient and community voice is so important. One of the obstacles is the significant power difference. We must build knowledge in communities, people living with HIV, and other people who should be included in the process. It’s very hard to change cultures, but it must happen and active collaboration between multiple-stakeholders [people affected] is critical to doing it. And of course, community engagement, education, and dialogue must remain a core part of the process along the way.
Social science research is now taking place around the globe. In the United States, researchers are targeting geographic locations that haven’t been reached, such as the Southeast, as well as populations that haven’t been well represented, including younger people, cisgender and transgender women of color, and black men who have sex with men.
Some new social science studies are seeking knowledge about perceptions of HIV cure and cure research from the wider communities that people with HIV come from as well as the health care providers who care for people with HIV.
These projects, scattered across Western Europe, Australia, China, Thailand, and South Africa are seeking answers to questions like these:
- Are the attitudes, beliefs and motivations of people who are actually in HIV cure trials substantially different than those who answered previous surveys?
- How do people with HIV and those affected by HIV in their communities view more controversial issues such as treatment interruptions, which pose risks for sex partners?
- What effect does stigma play on willingness to participate in cure studies?
- How do mothers of children with HIV, or their guardians, feel about allowing the children to participate in research?