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Vulnerable populations

Watch academics from Deakin and Griffith University discuss considerations for research involving vulnerable populations.
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The main ethical challenge for us is because we work with vulnerable people. We work with people who have mental illness or a severe injury and they’re in trauma. We work with children who’ve been abused. People who’ve faced significant natural disaster.
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Generally, people who are already vulnerable and could become more vulnerable through the process of talking about their situation. Or the process of answering lots and lots of very, sometimes, invasive questions, personal questions. It’s so easy as a researcher to think, we want to know that, that’s really valuable. And we forget that there are people on the other side of that, who need to be protected. And who need to come out of every experience feeling positive, rather than damaged. And often, research is about problems. It’s about how bad things are. And if you leave that data collection episode with someone in a distressed state, that’s a big ethical challenge.
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But I think there’s more subtle ethical challenges that people don’t think about and that’s things like impost on people. Just the fact that we expect people to come and be interviewed. To travel. To spend a couple of hours of their time. And then, perhaps, give them nothing back for that, except the greater good. And we think about the greater good all the time, but if that’s a cost to our participants, then we need to make sure that that’s not the case. So I think protecting people in that way. I also think cultural issues– bigger cultural issues are important. So we don’t often think about how does, say, an aboriginal culture think about research?
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What’s happened to that culture in history through research? None of it’s been positive. And we’ve taken blood samples. And we’ve damaged those people through research. So we need to make sure that research is for everyone’s benefit. In a study that I undertook some years ago, there needed to be some unlearning of Westernised ethical practises because I was being integrated in an indigenous community in which, we really needed to be considering indigenous research methodologies that hadn’t yet been very well established or understood from our Western ethical protocol perspective.
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And so, needing to familiarise myself with those methodologies and ways of being and doing in indigenous communities was incredibly important to not only the rigour and capacity of the research to do good, but also, to make sure that we were following the ethical protocols of that community in a really respectful way. In humanitarian settings, if you’re doing research, your research is a pretty low priority for people who have lost everything or been impacted by some kind of major disaster or event. So if you’re taking their time to interview them about the impacts or some consequence of the disaster, that time is time that they could have been spent earning money, or growing food, or looking after their children.
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It’s really important that you are able to be very sensitive to the other demands that people have on the time. And also, the fact that there might be other researchers or other people gathering information about the disaster, who might have already interviewed this village or this family numerous times.
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There are also– particularly, in all societies– there’s lots of power relations around gender and around people who are higher or lower in the social strata. If you’re interviewing people who are more vulnerable or more exposed, it’s very important that they have the opportunity to say no, that they don’t want to be interviewed. Or they don’t want to have their photograph taken. Or whatever it is. Or that you can do so in a way that doesn’t leave them vulnerable. So making sure that you can do something in a way that’s anonymous and sensitive to gender and power relations.
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For instance, making sure that as a middle aged white male, it would be very inappropriate in some societies, for me to interview a young woman. In which case, you need to re-design your research in a way that makes sure that there’s somebody appropriate who can interview young women. So presumably, another young female researcher.
Some research participants require more sensitivity and safeguarding.
Does the focus of your research centre around a marginalised or vulnerable individual or group of people? If so, you will need to be even more careful to ensure your research is conducted ethically and in a way that does not cause harm to susceptible participants.
Let’s take a look at a historically controversial study involving a baby.

‘Little Albert’

In 1919, Dr. John Watson wanted to know if fear is a conditioned response and he set up an experiment with an eight-month-old baby, who became known as ‘Little Albert’. The experiment began by exposing him to a variety of objects and live animals. It was noted that he was not afraid or intimidated – merely interested and curious of each.
In stage two of the study, the baby was again observed responding to an animal (a white rat) but this time he was simultaneously being frightened by the loud noise of a hammer hitting an iron bar behind him. In this traumatised state, he was then re-exposed to the other animals and objects.
At the time, Little Albert was said to have proven Watson’s association of conditioned fear theory, but at what cost to the child? Discrepancies in Watson’s methods have since led experts to contest the validity of the research and the long lasting effects on Little Albert are still wondered about today. Would the traumatic experiment have made him afraid of dogs, rabbits, monkeys, rats and images of Santa Claus for the rest of his life?
Case studies like ‘Little Albert’ leads us to question which populations are considered to be ‘vulnerable’ and how they should best be protected.

What is ‘vulnerability’?

When we talk about ‘vulnerability’ in research, we’re referring to people who can’t protect themselves from exploitation or unreasonable risks of harm (Tomossy, 2006). The power imbalance in research makes all people potentially vulnerable. You need to really know who you are working with. Regardless of the cohort, you must consider if each participant has the capacity to fully understand and agree to all aspects of the research. That being said, there are some groups acknowledged to be more at risk.

Who counts as ‘vulnerable’?

In Australia, The National Statement on Ethical Conduct in Human Research (2014) describes a number of population groups that may require additional considerations when undertaking research to ensure it is conducted ethically. These include:
  • children and young people
  • people in dependent or unequal relationships
  • people with cognitive impairment, intellectual disability, or mental illness
  • people highly dependent on medical care who may be unable to give consent
  • Indigenous peoples
  • pregnant women and the human foetus
  • people who may be involved in illegal activities
  • people in other countries
When it comes to research involving vulnerable populations, the most significant concerns surround questions about whether the potential participants are more likely to be at risk, feel more pressure to participate in a project and belong to a group who are considered to be an over-researched population.
Tomossy (2006) describes numerous examples where researchers have carried out studies with little consideration of the negative impact on vulnerable participants. For example, the Willowbrook Hepatitis study injected children who were mentally impaired with hepatitis to later inject them with gamma globulin to find out if it cured hepatitis. The pharmaceutical company Pfizer was sued for testing a prospective treatment for meningitis on 200 Nigerian children. Eleven children died and others were left paralysed, brain-damaged or blind.
Unfortunately, abuse in research is common and still occurs. While some abuse is intentional, in many instances it is not. Sometimes it occurs without awareness or foresight, highlighting the value of ethical review boards along with the importance of critically reflecting on your practice to ensure you do no harm to participants.

Your task

Select the comments link and post your thoughts on why ethics matter when it comes to research involving vulnerable participants.

References

Crow, J. (2015). The Little Albert Experiment: The perverse 1920 study that made a baby afraid of Santa Claus and bunnies. Open Culture.
NRMRC (2014). Section 4: Ethical considerations specific to participants.
Tomossy, G. (2006). Vulnerability in research. In I. Freckelton & K. Peterson (Eds.), Disputes and dilemmas in health law. Annandale, NSW: Federation Press.
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Why Ethics Matter: Ethical Research

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