Informed consent is one of the foundational principles of ethical research. More than just a formality or a signed document, it reflects a commitment to respect participants as autonomous individuals capable of making their own decisions. Whether the study involves interviews, clinical trials, or digital data collection, informed consent ensures that participation is voluntary, informed, and grounded in trust.

At its core, informed consent is about communication. It means providing potential participants with clear, honest, and accessible information about the research: its purpose, what participation will involve, any potential risks and benefits, how their data will be used, and their right to withdraw at any time without penalty. The goal is not to persuade but to empower. Individuals must be able to weigh the information and make decisions that align with their values, needs, and circumstances.

When done well, informed consent is not a one-off event but an ongoing process, especially in longitudinal or complex studies. Researchers must be prepared to answer questions, revisit explanations if needed, and ensure that participants genuinely understand what they consent to. This is particularly important in contexts involving vulnerable populations, language barriers, or complex subjects, where misunderstandings can occur easily.

Beyond ethical responsibility, informed consent also strengthens the quality of the research itself. Participants who feel respected and well-informed are more likely to engage meaningfully and honestly. In contrast, if participants feel misled, confused, or coerced, the data collected may be less reliable, and the integrity of the study can be compromised.

There are also legal and regulatory aspects to consider. Ethical review boards and governing bodies require researchers to demonstrate how they will obtain and document informed consent. Meeting these requirements is essential. But researchers should not lose sight of the human element: informed consent is, first and foremost, about the relationship between researcher and participant.

In an era of increasingly complex research, such as genetic studies, digital health interventions, or passive data collected via apps, ensuring that participants fully understand what they agree to is more important than ever.

Psst! Read our last blog for tips on how to ensure your participants are truly informed when collecting consent.

Ultimately, informed consent matters because it affirms the dignity of each participant. It reminds us that research is not just about collecting data - it’s about people and our responsibility to treat them with honesty, care, and respect.

Lois Ann Parri

Originally written on March 2024 – London, England UK