4. Voluntary Participation: Choosing to Take on The Risks of Research

Individuals are self-governing. This means that:
  • Within limits set by society, people generally control or shape their own lives in significant and meaningful ways.

  • They have personal goals, values and preferences.

  • They can make and act on plans for themselves and their lives. This will take into account goals, values, preferences, the options before them and other matters.
This self-overning ability is called ‘autonomy’. It is often thought to be what sets humans apart from other beings. It is considered valuable and worth protecting. Autonomy is held in such high regard that it is considered part of the integrity of a person, that is, part of what makes a person complete or whole.

Historically, this principle is connected to the idea that all persons have intrinsic worth or value. This is independent of any special circumstances that might grant that person value. In other words, it doesn’t matter who that person is or what they do, they still have value. Actively showing respect for the autonomy of others involves due appreciation of their abilities and opinions.

This includes their rights to:
  • Hold certain views,
  • Make certain choices, and
  • Take certain actions based on personal values and beliefs.
In research involving human participants, researchers must conduct studies in a way that demonstrates respect for autonomy. This is particularly important when gaining a prospective participant’s consent to take part - they must make sure that a participant is able to make their own choice about whether or not to participate in research. Consent is a process that may be achieved in different ways. However, for the consent to be valid or genuine, respect for autonomy is key (among other factors).

In some communities, the values of individuals are dependent on the values of the wider group (e.g. the family and/or community). Before a person can decide whether or not to give their individual consent to participate in research, they may need to consult, inform, or agree with members of their family (e.g. parents, head of household or spouse).