For love and money: the need to rethink benefits in HIV cure studies

Abstract

HIV cure research holds great potential to eradicate HIV, but the benefit to early trial participants is likely to be small. Moreover, participation carries unknown and possibly significant risks to research participants. This is the risk:benefit ratio challenge of HIV cure research. Although it may be consensual and rational for individuals to participate in HIV cure research that requires a degree of self-sacrifice, I argue that altruistic research participants can be exploited when the benefits to them are unfair. Transactions of this kind should not be prohibited, as that would be unacceptably paternalistic and thwart socially valuable research. Nevertheless, we should not simply accept these transactions but must work to reduce or eliminate exploitation by enhancing the benefits so that research participants are better off by their own lights. Offering payment in HIV cure research is the optimal way to enhance benefits to research participants and to make the risk:benefit ratio more favourable. I argue for a payment-as-benefit model against the standard view, assumed in ethics and policy, that offers of payment are not legitimate benefits.

Ethics of treatment interruption trials in HIV cure research: addressing the conundrum of risk/benefit assessment

“…Some commentators acknowledge participant perspectives in terms of rational decision making, but discount their ethical import by framing them as inclusion benefits, which are difficult to predict and often person specific, 40 or by acknowledging their import, but dismissing their ethical salience. 17 In contrast, our data indicate that the potential for a more normal life, enhanced self-worth and contributing benefits to the HIV community were anything but insignificant for SEARCH 019 participants. They seem to play a major role in making trial participation attractive, acceptable or meaningful.…”

“…A third approach is for researchers to enhance the benefit side of the equation, such as by offering financial compensation that would contribute to a more positive risk-benefit assessment of research. 17 Another approach would address the problem by considering societal as well as individual benefits associated with research; that is, what initially looks like a bad gamble for individuals may not be a bad gamble overall. 18–20 As such, the research could arguably be ethically permissible on these grounds, though one might still worry that participants are recklessly sacrificing themselves for the greater good.…”

Ethical considerations for HIV cure-related research at the end of life

“…Undoubtedly PLWHIV should be permitted to assume risks to help advance HIV cure science. While the presence of altruistic motivations may reduce concerns of exploitation, there should nonetheless be limits placed onto altruism [ 68 ]. Różyńska justified the imposition of limits on risks in clinical research by the need to protect both the research enterprise and the study participants [ 69 ].…”

Ethical issues in HIV remission trials

“…Several bioethicists recommend offsetting any remaining risks in cure-related studies by appealing to or enhancing the many potential indirect benefits of study participation, both medical and nonmedical [ 40 , 42 , 44 ]. This has been proposed for addressing the risks from ATI studies [ 39 ▪ , 45 ▪ ].…”