A most precious gift

Clinical research would be impossible without patients who generously donate their blood and other tissues. We use their samples to validate data gathered in animal or cell-based studies – a certain treatment may work wonders in mice but if it doesn’t work on human cells it’s probably not worth it to investigate the compound in clinical trials. Donated samples are also essential to gain knowledge regarding fundamental processes in the body and how disease affects them.

On a daily basis I ask patients if they are willing to participate in research. It’s a short conversation in which I briefly explain the goal of the study, what participation entails and the pros/cons of participation. In the case of a blood donation it usually means donating a few extra tubes (10-20 mL), scheduled to coincide with their regular blood draws so there is almost no discomfort involved (no extra needle stick). However, sometimes participating involves taking a skin biopsy. This is a more invasive procedure with more discomfort and you’ll have a small but visible scar afterwards.

So naturally not everyone wants to participate. And that’s okay, because it’s still your body and your decision. I am very happy with the samples I can obtain, they’re irreplaceable gifts to the field of medicine – but it’s not like my day is ruined just because someone said no. That’s sort of the reason for informed consent – you always have the option of declining and no one will hate you for it.

For some patients, this is hard to understand, they tell me how bad they feel that they don’t feel like ‘giving something back’ or they are worried that it will impact my research projects. This really touches me, because why would they feel bad? I’m the one asking an outrageous question – would you be willing to receive a scar so I can look at your cells in the lab?

Apparently, not all scientists have this mindset because the rules regarding clinical research are very strict (for instance, the reason that there are physician-researchers who are not directly involved in patient care is that the doctor-patient relationship isn’t tainted by a request to participate in a study). You are not allowed to make the patient feel pressured in any way, so if someone declines you can’t really persuade them to participate anyway, apart from providing factual information regarding questions they have.

When a patient expresses that they feel bad about their decision to say no, I try to take some time to reassure them that it really doesn’t matter. I wonder whether they really understand, though. So hence the blogpost – I value it that people are willing to talk to me and consider participating, I see it as my job to help people reach the decision they want, I’m not afraid of checking if they are completely sure if I notice that they seem a bit unsure. I’d rather exclude someone than include a person who didn’t participate of their own volition. And, in the end, I’m doing this research to benefit patients. The end doesn’t justify the means, if I don’t do justice to their right to refuse, how can I still say I’m all doing this for the patients?

Sometimes, this short informed consent conversation develops into a longer interactions where patients tell me about their journey in medicine so far and how interesting is is that someone finally respects their decision. Interactions like these reinforce my idea of how I’d like to practice medicine. Patients should always be given a voice when it comes to important treatment decisions. And not just ‘do you consent to this operation’, but listing all the options, the pros and the cons and the alternatives. Because that’s what we do in clinical research, so why not in clinical practice?

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