Healthcare relationships: Is it ethical to pay subjects for their participation in research studies?

Would you be more likely to take part in a medical study if you were well paid for it? In this Wi-Phi video, we’ll ask whether medical researchers should monetarily compensate the human subjects whose participation makes their research possible. Sometimes it’s easy to think that progress in medical science is all about smart scientists coming up with brilliant ideas for new and exciting medical technologies. The truth, of course, is that while brilliant ideas might be needed to get the ball rolling in a promising direction, medical progress – like all scientific progress – only happens through a painstaking process of trial and error. And in medical science, an especially important part of this process involves several phases of human subject trials, in which a new device, drug, or technique is experimentally tested on human subjects to determine whether it’s safe and effective enough for general use – which, as things turn out, it often isn’t. This means that medical progress depends on researchers somehow getting a whole lot of people to take part in a whole lot of medical studies, testing experimental technologies that, quite often, will be found too risky to approve. This raises an interesting question: How do we get enough people to take part in this necessary – but risky – medical research? We certainly wouldn’t want to coerce people against their wishes, ike those Nazi scientists who conducted experiments on their unwilling prisoners. One of the key principles of modern research ethics is that researchers must respect the autonomy of participants – the participants’ capacity to make free and informed decisions for themselves about whether to take part in a given study. The question, then, is how do we get enough people to take part in experimental research voluntarily? Well, what would convince you to participate in a medical study? Some participants are dealing with a health condition that’s proven resistant to current medical science, and they see the experimental innovation as their last hope for an effective treatment. Or they hope that their participation might at least end up helping others with similar conditions. Other, healthier, participants simply want to contribute in some way to scientific progress and the greater good. While people participate for a variety of reasons, the truth is that participating in medical research is pretty unlikely to substantially benefit the subject themselves, and might very well end up harming them in some way. Meanwhile, as we just saw, participation in medical research is not just beneficial but even indispensable to medical science, not to mention the careers of research scientists. Is this a fair deal for participants? Is the slim chance of personal health improvement or the satisfaction of helping society an adequate reward for their vital contribution to science? Or are researchers only able to recruit enough subjects by taking advantage of people’s medical desperation or good will? One obvious way to more explicitly recognize the value of participants in medical research – and hopefully ensure that they aren’t being taken advantage of – would be to offer them a direct incentive for taking part: that is, to pay them. So it might be surprising to hear that most medical research subjects aren’t paid at all for their participation, other than maybe to cover their costs, such as for travel to the study site. This is especially true with subjects from impoverished populations or in developing countries, who would seemingly really benefit from having their participation monetarily rewarded. Are the researchers just being tight-fisted? Or is there a good reason many researchers and ethics review boards are hesitant about offering payment to research subjects? Well, consider how the prospect of monetary compensation might affect a person’s willingness to take on risk. Someone who otherwise wouldn’t think the risks of participation are worth taking on merely for scientific progress or the off chance of a notable health improvement might start to think differently once money enters the picture. And it might be even harder for them to say no to a risky study if their financial situation is precarious and the money would help them deal with other hardships. Then the choice would no longer be just whether the person is willing to face the risks of the study, but also whether they’re willing to bear the consequences of turning down the cash. And this matters. Making it harder for you to say no to participation could be a way for researchers to take advantage of you. Sure, paying you isn’t the same level of coercion as forcing you at gunpoint but if the payment offer is especially attractive, it could work to distract you from soberly considering the risks of participation. Intentionally or not, the researchers could end up pushing you to make the decision they want, rather than a decision you’re comfortable with. On the other hand, should we take the mere possibility of such financial coercion as reason to prohibit any substantive payment to research subjects? Yes, monetary rewards can sometimes be used in ways that inappropriately influence a person’s decision. But surely we don’t think that every offer of monetary compensation exploits us and undermines our autonomy! In fact, we started off thinking that that paying research subjects could be a way to ensure that they aren’t exploited. It seemed like a way of recognising and rewarding the crucial contributions they make rather than just using them for the sake of medical progress. And couldn’t a person’s decision be influenced in other ways, anyway? For example, you might learn that, as part of a study’s long-term monitoring and data collection protocol, subjects will be getting regular medical check-ups by a top-notch healthcare team otherwise inaccessible to them. If that were to influence your decision, would that also be inappropriate? And, of course, a person might fully and clearly recognize the risks of a study, fully and clearly recognize the way the monetary incentive is influencing their decision, and yet still autonomously and meaningfully choose to take part in the research because of the payment. Who are we, really, to say that this person’s decision has been unduly influenced? So, if our goal is to fairly recognize the vital contributions of research subjects without improperly influencing their decision, is paying subjects for their participation a reasonable solution? What do you think?