Respect for autonomy

Posted on Mar 19, 2015 by Leslie Gelling in confidentiality, Ethics, Fidelity, informed consent, Justice, Non-maleficence, Recruitment and retention, Research, Research ethics, respect for autonomy, Veracity

In the seventh and final blog in this series on the ethical principles underpinning research I’m going to consider ‘respect for autonomy’. This principle requires that researchers allow individuals to make free and voluntary decisions about participating in research after they have been provided with the information they need to make an informed decision.

It is slightly unusual that I’ve made this principle the final blog because the requirement that researchers seek informed consent was the first and most important principle in both the Nuremberg Code and the Declaration of Helsinki. I have decided to deal with this principle at the end of this series because it is this principle that undoubtedly pulls all seven principles together in a meaningful way.

In previous blogs I often made the point that it is impossible to consider the seven ethical principles in isolation. Nowhere is this clearer than when considering respect for autonomy:

Beneficence. There needs to be value and purpose to all research and individuals being invited to participate in research should have an understanding of that purpose when making a decision to participate or not. If there isn’t a purpose why should someone get involved in the research?
Non-maleficence. Individuals invited to participate in research should have no doubts about the possible risks to them from participating in the research. Some might be willing to take greater risks than others but they can only make that decision if they know what the risks are.
Fidelity. Individuals are more likely to consent to participate in research if they trust those undertaking the research. Research participants are also more likely to continue in the research if a trusting relationship is maintained between participants and those undertaking the research.
Justice. It is important that potential research participants know why they have been invited to participate in the research.
Veracity. Researchers need to be honest with individuals being invited to participate in their research. If there is a significant burden associated with participating in a research project then potential research participants need to have that information if they are to make an informed and autonomous decision.
Confidentiality. Potential research participants need to know what will happen to data that is collected about them. Who will know they have participated in the research? Might they be contacted again in the future?

Allowing someone to make an autonomous decision to participate in research requires that researchers take each of the above principles into consideration when planning how they will manage the process of seeking informed consent.

It is also important for researchers to remember that signing a consent form only marks the start of autonomous decision making for their participants. Someone can choose to change their mind about participating in a research project at any time and a statement about this is invariably included in participant information sheets. It is important, therefore, that researchers continue to consider the above principles throughout their research. For example, if during a clinical trial of a new medicine a new side-effect is identified it is important that research participants are informed because this new information could influence their decision to continue in the research. Such an approach requires researchers to consider non-maleficence, fidelity and veracity.

It is important that researchers take the principle of ‘respect for autonomy’ seriously. Researchers need to respect each individual’s decision, even if it is not the response the researcher was hoping for. Researchers are often under considerable pressure to achieve recruitment targets but such considerations cannot be allowed to influence a researcher’s approach to participant autonomy.

I hope you have found this series of blogs interesting and informative and if you want to learn more about the practical application of these principles then you might want to consider attending Clinfield courses on informed consent, applying for ethical opinion in the NHS or meeting the challenges of recruitment and retention in clinical research.