Confidentiality

Posted on Mar 13, 2015 by Leslie Gelling in confidentiality, Ethics, Fidelity, Research, Research ethics

In my penultimate blog exploring the ethical principles underpinning research I’m going to consider ‘confidentiality’. Whilst all healthcare professionals will be familiar with this principle, it is worth taking time to explore how this principle might need to be treated differently in research situations.

For confidentiality to exist, two or more individuals must have established the following conditions:

The first person (usually the researcher participant) will have agreed to share information they wish not to be shared outside agreed boundaries.
The second person or persons (usually the researcher(s)) will have agreed not to disclose information provided to them by the first person outside agree boundaries.

If the second person does not divulge the information provided to them then confidentiality is maintained.

It is important to remember, however, that confidentiality within a research context is not absolute. This makes it important that researchers and potential research participants consider the limitations of confidentiality during the process of seeking informed consent. These limitations might be due to:

Risk of harm to self or others. If during data collection a researcher learns that there might be a risk of harm to the participant, or anyone else, they need to consider taking action. For example, during interviews a researcher might learn that a participant is considering taking their own life.
Dangerous practice. If during data collection a researcher observes dangerous practice, that might result in harm, then the researcher would need to consider taking action. For example, if during an observational study the researcher observed a practitioner about to do something that the researcher knows might cause harm.
Criminal activity. If during data collection a researcher learns that someone has been involved in criminal activity then the researcher needs to consider taking action.

These limitations to the principle of confidentiality might not seem surprising and are already embedded in the NMC‘s ‘The Code‘, in which nurses are instructed to ‘make the care of people your first concern’. Applying these limitations to confidentiality in a research situation, however, is not always straight forward. There is occasionally research where a researchers might have to guarantee confidentiality, without one or more of the above limitations, to make the research possible. It is, therefore, essential when planning any research that due consideration is given to the principle of confidentiality and how the above limitations might be managed.

There may be situations where it is appropriate to explain the limits of confidentiality in the information provided to potential research participants. Returning to the above example, if research is being conducted in a patient population diagnosed with severe depression, it might be appropriate to make reference to action that might be taken should someone express a desire to harm themselves during the research.

Making decisions about the limitations of confidentiality are important because they can have an impact on other ethical principles. In an earlier blog about ‘fidelity‘ I made the point that research is about creating and maintaining trusting relationships. Such relationships can only be created if participants believe that what they might say in an interview will be treated as confidential or if their participation in a clinical trial will be treated as confidential.

As a REC Chair, one of the commonest difficulties when considering confidentiality in a new application is when the researchers appear to confuse confidentiality and anonymity. For example, it is not uncommon for researchers to plan the collection of data through anonymous questionnaires and to plan sending reminder letters to those who don’t respond to an initial invite. Similarly, researchers collecting data through interviews can offer to anonymise the data during transcription but they cannot guarantee anonymity. It is important that confidentiality and anonymity are treated as linked but separate issues.

In this blog it has only been possible to touch on the complexity of confidentiality but I hope I have emphasised that it is a principle that cannot be taken for granted in any research. Next week’s blog will be the last in this series and will focus on perhaps the most important principle, ‘respect for autonomy’.