Confidentiality means protecting a research participant’s information so it cannot be misused. Different types of information require different levels of confidentiality. We often ask research participants about sensitive matters such as experiences, emotions and health problems which they might not usually discuss with others. They are only willing to share this information with us because we commit to respecting their privacy, protecting their confidentiality and ensuring their anonymity.

Respecting Privacy

Privacy in research can be defined as, ‘the control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others’ (UCI Office of Research).

We need to take different forms of privacy into consideration when doing research (Iphofen, 2011):

  • Bodily privacy: Protection of people’s physical selves against invasive procedures (e.g., genetic tests, drug tests, cavity searches)
  • Territorial privacy: Limits to our ability to enter domestic or workplaces (e.g., home searches, installing of video surveillance devices, ID checks)
  • Information privacy: Rules around collecting and handling personal data (e.g., credit information, medical records, government records)

Participants have a right to have their privacy protected. The Universal Declaration of Human Rights outlines in its Article 12: ‘No one shall be subjected to arbitrary inference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such inference or attack.’

However, protecting participants’ privacy is challenging, especially because research increasingly uses participatory and visual methods. For example, there is a trend to use smartphones to film, audio record and take pictures. Such devices allow us to share data with our participants, receive feedback and co-produce knowledge. But the convenience of using smartphones comes with key ethical problems relating to data sharing and ensuring the privacy of other people portrayed in the photos or films (Tze et al., 2015).

Protecting Confidentiality

Confidentiality means protecting a research participant’s information from being misused. Different types of information require different levels of confidentiality. Some information is treated as ordinary and can be readily shared (e.g., someone’s favourite colour) while other information is considered ‘private’ and cannot be shared with other people (e.g., bank account information) (Iphofen, 2009).

In research, however, confidentiality is never ‘complete’. If we were to treat everything we hear with full confidentiality, we would not be able to carry out research, analyse data or share our findings with others. To maintain an appropriate level of confidentiality we can:

  • use code numbers for questionnaires and pseudonyms for qualitative studies so the information cannot be related back to the participants
  • conduct interviews in private settings where others cannot overhear what is being said
  • interview people who have a relationship separately, such as couples, or parents and children.

However, these decisions are not straightforward and are very much context dependent.

Ensuring Anonymity

Anonymity means that research participants are not able to be identified from the information collected. Anonymity is regarded as a yes or no question – either an identity is kept secret or it is not (Iphofen 2004). However, maintaining anonymity is not always straightforward, or in the control of the researcher.

For example, the requirement to sign consent forms presents an important challenge to anonymity. Iphofen (2011) notes: ‘In order to formalize the agreement to a research engagement and, theoretically, protect both parties signed consent forms set up a contradiction between consent and anonymity.’

To address this problem, we are required to:

  • store consent forms separately from interview transcripts or questionnaires
  • replace names with numbers or pseudonyms
  • password-protect all files and the computer
  • keep printed materials under lock and key

At the same time, it must be recognised that not everyone can or wants to be anonymised. For example, community or peer-researchers might want to be fully recognised for their work while others feel that pseudonyms strip them of their identities. Although not always possible, we should try to comply with those wishes while not compromising the safety of our participants.

(Author: Hanna Kienzler)

What is it?

Websites:

Universal declaration of human rights by the United Nations

Article 12 of the United Nations Declaration of Human Rights sets out ‘privacy’ as a human right.

(Academic reference: United Nations. (n.d.). Universal declaration of human rights.  https://www.un.org/en/about-us/universal-declaration-of-human-rights)

Privacy and confidentiality by University of California, Irvine

This website defines ‘privacy’ and ‘confidentiality’ in the context of research. It also gives tips of how to maintain them.

(Academic reference: University of California, Irvine. (n.d.) Privacy and confidentiality. https://research.uci.edu/human-research-protections/research-subjects/privacy-and-confidentiality/)

Reports:

Information governance in health by Sarah Clark and Albert Weale (2011)

This report defines anonymity (p. 13), privacy (p. 17), confidentiality (p. 22). It also explains our obligations as researchers and the challenges we might encounter in this process.

(Academic reference: Clark, S. & Weale, A. (2011). Information governance in health. Nufflied Trust. https://www.nuffieldtrust.org.uk/files/2017-01/information-governance-in-health-report-web-final.pdf)

NHS Code of Practice: Confidentiality by the Department of Health (2003)

This document sets out the code of practice for ‘confidentiality’ within the clinical setting. Please note that some aspects differ when it comes to research. Nevertheless, it gives a good understanding of what is meant by confidentiality.

(Academic reference: Department of Health. (2003)NHS Code of practice: confidentiality. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/200146/Confidentiality_-_NHS_Code_of_Practice.pdf) 

Articles:

Too much information: visual research ethics in the age of wearable cameras by Tze Ming Mok, Flora Cornish and Jen Tarr (2015)

In the context of visual research, article explains what anonymity, confidentiality and privacy are and why it is important to maintain them in research. It focuses on the challenges in relation to wearable cameras and easily shareable data.

(Academic reference:  Mok, T. M., Cornish, F., & Tarr, J. (2015). Too much information: visual research ethics in the age of wearable cameras. Integrative Psychological & Behavioral Science, 49(2), 309-322.) 

How is it done?

Articles:

Protecting respondent confidentiality in qualitative research Karen Kaiser (2009)

The author uses an example from a study of breast cancer survivors to discuss confidentiality dilemmas and how they can be avoided in qualitative research.

(Academic reference: Kaiser, K. (2009) Protecting respondent confidentiality in qualitative research. Qualitative Health Research, 19(11), 1632-1641.) 

Qualitative research with small connected communities: generating new knowledge while upholding research ethics by Thecla Damianakis and Michael R. Woodford (2012)

The authors draw on their experiences conducting studies with small communities. They expand the dialogue concerning qualitative research ethics by making explicit conceptual and practical tensions that emerge at various stages of the research process; articulating reflective processes; and exploring issues associated with strategies for upholding confidentiality. They conclude with lessons learned to guide researchers who might face similar challenges.

(Academic reference: Damianakis, T., & Woodford, M.R. (2012) Qualitative research with small connected communities: generating new knowledge while upholding research ethics. Qualitative Health Research, 22(5), 708-718.) 

Books:

Strategies for maintaining privacy and confidentiality by Ron Iphofen (2009)

In this introductory book chapter, the author explains strategies for maintaining privacy and confidentiality in research. The examples make clear that this is straightforward, but requires a very good understanding of the research context and weighing of risks.

(Academic research: Iphofen, R. (2009). Strategies for maintaining privacy and confidentiality. In Ethical decision making in social research: A practical guide (pp. 91-106). Basingstoke: Palgrave Macmillan.)

Method in action

Articles:

Ethical issues in social media research for public health by Ruth Hunter et al. (2018)

This article focuses on social media research. It outlines the key ethical concerns for public health researchers using social media and discusses how these concerns might best be addressed. Key issues discussed include privacy; anonymity and confidentiality; authenticity; the rapidly changing social media environment; informed consent; recruitment, voluntary participation, and sampling; minimising harm; and data security and management.

(Academic reference: Hunter, R. F., Gough, A., O’kane, N., McKeown, G., Fitzpatrick, A., Walker, T., … & Kee, F. (2018). Ethical issues in social media research for public health. American Journal of Public Health, 108(3), 343-348.) 

Anonymising interview data: Challenges and compromise in practice by Benjamin Saunders, Jenny Kitzinger, and Celia Kitzinger (2015)

Using examples from in-depth interviews with family members of people in vegetative and minimally conscious states, this article discusses the issues researchers faced in trying to maximise participant anonymity alongside maintaining the integrity of their data. They discuss how they developed elaborate, context-sensitive strategies to try to preserve the richness of the interview material wherever possible while also protecting participants.

(Academic reference: Saunders, B., Kitzinger, J., & Kitzinger, C. (2015). Anonymising interview data: Challenges and compromise in practice. Qualitative Research, 15(5), 616-632.)