Skip to 0 minutes and 9 secondsThings that come out of research projects must go somewhere. If it just goes to an academic journal, then that's not going to be read by many people who can make a change. So we need to find other ways of disseminating results, but when we do that, we have to be so careful. We have to be careful, particularly, with small data sets, where people can be identified. So often, in qualitative research-- for instance-- people will use a quote from an interview and in that quote is something that can identify someone who said something a bit controversial. I deal a lot with issues of sexual violence or domestic violence of conflict-related trauma. These are very difficult issues for people.

Skip to 1 minute and 0 secondsI often, don't use personal testimony. I use publicly available material so, women's organisations, I make sure that I use their reports, their submissions, as opposed to individual testimony. I do, do a lot of interviews, but they're usually as background, as opposed to quotes. So one of the main ethical concerns is about respecting privacy of individuals. So for example, we're really interested to know what people think about changes to food outlets, when we shift from unhealthy to healthier food. But you can imagine, if we're asking the staff of a particular cafe, what do you think about these changes? They might feel they're a bit at risk if they tell us the truth.

Skip to 1 minute and 43 secondsWhat if their manager finds out and they said, they didn't like the changes. And so, we always have to be really careful to say, we will always protect your privacy. We'll never tell anybody else what you've said. And anything we might publish write or talk about like in an instance like this, we would never identify you as the person who said those things. Or you as the person who gave that answer. So there's protecting confidentiality in that sense so sort of stripping away any identifying details. And then, there's also, the idea that you would generally present results, we say, in aggregate, as a group. You would never present results of one individual person at a time.

Skip to 2 minutes and 18 secondsI'm a clinical researcher so we have ethical challenges constantly when we do research. And that often, relates to us being in the clinical area, where we're there as a researcher. We're not there as a practitioner. But we might actually see something that's not right. And we might see that in the course of doing our observations so it then, becomes a challenge for us to say, we've told the participant that we're not going to share their data with anybody, but if we see them doing something unsafe, are we obligated, as a professional, to report that? So we're very careful in the beginning, when we get consent, that the participants actually know where we stand on that.

Skip to 2 minutes and 57 secondsSo if we do see something that we consider immediately unsafe for a patient, we will intervene, even though we're not there in that capacity. If you're doing research in a small setting, people will recognise each other, once you publish those findings. So disseminating research is something that has to have very careful thought behind it, to make sure that it firstly, that it's having impact. And secondly, that it's not exposing anyone to criticism or influencing anyone in a negative way. With the ethics of sharing results, that's very much in the planning part of research. So right from the beginning, there should be a plan for how the sharing takes place.

Skip to 3 minutes and 46 secondsAnd that then, becomes part of the ethical commitment of all of the parties involved. So for example, in research that we've conducted recently with teachers around their efficacy, right up front, those teachers knew that we would be asking them if we could sit in their classrooms and observe them. We would also, be asking them to make judgments about their confidence and competence. And we would be giving that feedback back to them for consideration. But we also said, right from the very beginning, we'd like to publish this so we would like to have your consent.

Maintaining confidentiality and privacy

You have an obligation to protect your participant’s privacy and confidentiality throughout the entire research process.

Your responsibility to maintain privacy and confidentiality is often directly connected with the ethical principles of Beneficence and Respect. This makes perfect sense when we think about the potential for harm (such as social, professional, legal and economic harm) to be caused due to breaches in this area.

Sometimes participating or even expressing an interest in participating in a project can be a source of harm, if it becomes known to third parties.

Maintaining privacy and confidentiality helps to protect participants from potential harms including psychological harm such as embarrassment or distress; social harms such as loss of employment or damage to one‘s financial standing; and criminal or civil liability (UCI, 2015).

Case Study: When anonymity goes wrong

Carolyn Ellis conducted an ethnographic study in a small fishing community in the USA. Her research participants were outraged when her published work ‘Fisher Folk: Two Communities on Chesapeake Bay’ was released (Tolich, 2014). Although the researcher had used pseudonyms in her book, the community was so small that the participants could easily identify who was who. The revealing and sometimes controversial nature of the information shared with the public caused tension in the community. They were incredibly angry and the researcher was devastated to learn the participants were left feeling betrayed and objectified (Ellis, 2007).

Lessons learned?

The way you protect your participants’ identity and personal information needs to be carefully considered and strategically woven into the design of your research. For example, what will you advise participants during the consent process? How will you protect privacy and confidentiality during the process data collection and when you disseminate your results? It’s important to specifically advise participants who you intend to share the results of your research with and how. The participants themselves can best judge the potential for identification and associated harm. For this reason it’s good practice to show them how their comments or information will be used before disseminating. They can then indicate if further de-identification is required.

When it comes to anonymity, don’t assume all participants want their names withheld. In some studies, the participants may feel very strongly about their experiences and feel empowered by being named when their story is shared. Others may only consent to participation if anonymity is assured.

Portrait of serious young ginger European woman covering mouth with both hands keeping a secret © Shutterstock

Limits to confidentiality

What if you discover something during the course of your research that makes you fear for the safety of the participant or someone they are involved with? Do you break the confidentiality agreement to advise an appropriate medical or legal professional? This type of ethical dilemma is best discussed with a research supervisor if you are working with one. If not, perhaps seek independent advice from a legal professional. Depending on the nature of your discovery and your geographical area in the world, you may have a legal duty of care to act on information if you fear for someone’s safety.

For this reason, as part of your consent process, it’s important to let participants know what the limits to confidentiality are. For example, you need to advise them that the information shared shall be kept private, unless you suspect someone may be hurt.

Also keep in mind, the information you collect during your research is not ‘privileged’. In other words, your research is not protected in the same way details shared between a client and their legal counsel is. In his article, Why Researchers Should Get the Same Client Confidentiality as Doctors, Nathan Emmerich argues the case for researchers having more protection over their sources of research information. Do you agree or disagree? In recent years there have been a few cases of researchers being found to be in contempt of court for refusing to divulge the identities of participants. Why do you think those researchers were willing to spend time in jail?

Web based research

If you’re using the Internet to gather research, keep the following points in mind.

  • You must have consent before sharing information about someone’s Internet browsing activities.
  • It’s a breach of privacy to install software on a computer without the knowledge and consent of the user.
  • In Australia, the Children’s Online Privacy Protection Act (COPPA) obligates anyone contacting a child through the Internet to obtain parental consent and notification before any personal information or identification can be provided by a child. Check the requirements in your geographical area.

Case study: The Tea-Room Sex Study.

This infamous case raises many red flags in relation to privacy. Let’s see what you think.

In the late 1960’s a university student undertook covert research by posing as the ‘lookout’ for men who were meeting in public park restrooms to engage in homosexual activity. These restrooms were commonly referred to as ‘tea rooms’ and many man were being arrested at the time for engaging in homosexual practices. To try to understand the phenomena, the student observed the activity without identifying himself as a researcher (Lehmiller, 2012).

He then secretly recorded the vehicle registration plates of the men and was able to track down their names and addresses through some contacts in the police force. In disguise, he visited the men in their own homes one year later. He was able to draw a lot of personal information about their lives and relationships under false pretences (Lehmiller, 2012).

The researcher argued his results challenged social stereotypes that could not have been achieved without the deception (Lehmiller, 2012). No one was physically harmed and the men’s details weren’t identified in the published work. Does this make it ethical, though? The slippery slope of research ethics, becomes more apparent as we move into the next section of the course: Do the ends justify the means?

Your task

A researcher is conducting a study on the experiences of victims of violent crime. She is planning to ask the victims to provide details about their victimisation, mental health and feelings toward their perpetrators in a survey questionnaire. Does this study raise ethical concerns, with respective to privacy and confidentiality? Are there beneficence considerations? If so, what are they and how could they be addressed so the research could be undertaken? Select the comments link and post your response.

References

Ellis, C. (2007). Telling Secrets, Revealing Lives: Rational Ethics in Research with Intimate Others. Research Ethics. Vol 13 (1)

Lehmiller, J. (2012). Tearoom trade and the study of sex in public places.

Tolich, M. (2014). What can Milgram and Zimbardo teach ethics committees and qualitative researchers about minimizing harm? Research Ethics. Vol 10 (2).

UCI Office of Research. (2015). Privacy and Confidentiality.

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This video is from the free online course:

Why Ethics Matter: Ethical Research

Griffith University