Participating in medical research

The people who participate in medical research (the subjects) receive a letter containing detailed information about the research and their participation. If anything is unclear, participants can always ask the researcher for more information. 

They can also ask an independent expert for information at any time. The independent expert is another doctor or scientist who knows a lot about the topic, but is not involved in the research project. The information letter for participants explains how they can contact the independent expert. Participation in medical research is a personal decision and is always voluntary.

What are the reasons why you might want to take part in medical research?

Everyone who takes part in medical research has their own reasons for doing so.

  • People who volunteer as subjects want to help advance scientific knowledge.
  • Sometimes the research project will involve testing a new treatment that participants hope to benefit from.
  • Research can also increase our understanding of a disease process.

Human subjects usually do not earn any money from taking part in research. But they do often receive compensation for travel costs.

Things to bear in mind

Participating in medical research can be taxing and time-consuming. It could take up half a day or involve several short visits. The treatment might have risks or side effects. Researchers don’t always know what the primary effects and side effects of an experimental treatment will be.

How much effort subjects are required to make and the risks involved will depend on the type of research and the type of treatment. Human subjects might:

  • need to undergo frequent medical checks;
  • have to make lists or keep track of information;
  • be exposed to a certain amount of risk. This is because the treatment is new and is still being tested. The primary and side effects are not yet fully known. In addition, the researchers will probably need to carry out extra tests and take one or more blood samples. The size of the risk depends on the type of research.

Participating in medical research can be taxing or cause discomfort because sometimes subjects:

  • have to undergo multiple physical examinations;
  • have to answer questions about unpleasant experiences;
  • have to stop taking their own medication; or
  • have to follow special rules about drinking alcohol, smoking or using birth control.

Participating in medical research

All human subjects must sign a consent form to show that they are participating voluntarily. Everyone receives a copy of their signed consent form. In many cases, people who volunteer for medical research have to have a medical examination first. The researcher needs to make sure they are physically suitable.

Subjects have the right to quit a research project at any time, even after it has started. And they don't have to give a reason.