Vulnerable People and Groups

Anonymity, Confidentiality and Protecting from Danger

Making things better, not worse ¦ Avoiding exploitation and causing of distress

Guaranteeing anonymity and confidentiality is a basic ethical pillar of all social research. However, these principles become especially significant when working with vulnerable individuals and groups, especially in situations where the people concerned are already marginalised or stigmatized. In these situations there can be danger of exacerbating or further entrenching negative social stereotypes thereby further marginalizing the individual or group. There can also be more specific dangers such as loss of employment or accommodation (e.g. because of a medical conditions or sexual orientation), physical violence (e.g. from the husbands of abused women) and threats from the state to political activists. However, it should also be borne in mind that vulnerable people may be in greater danger from not having their story told. Research can sometimes play an important role in giving a voice to the socially marginalized through effective dissemination of findings (see ‘Dissemination’). Hence, there can be a difficult balance to be achieved between authenticity and exposure of individuals.

Clearly, people for whom participating in research could be dangerous will need strong assurances of anonymity and confidentiality: guaranteeing that participants will never be identifiable from the information they personally offer gives the participant a certain liberty to discuss and report more sensitive and contentious experiences and responses. Researchers have obligations to take all possible steps to protect them when publishing findings and during the conduct of the research itself.

In order to effectively conceal the interests of participants it may be necessary to disguise information from which individual identities, or general group identities, could be inferred. In addition to utilizing pseudonyms for participants, researchers can also take measures to disguise the research location. In cases where this is not viable because it would seriously compromise the usefulness of the research findings, potential participants should be made aware that it will not be possible to completely disguise their identities.

During the conduct of research it may be important to ensure that participants are not seen with, or known to be in contact with, the researcher – this might be to hide involvement from others in the person’s own circle, or from the wider world. The simplest approach is to design the research to minimise personal contact. For instance, use of online surveys which do not ask for names or identifiers, or postal questionnaires has minimal risk. Where the research requires personal meetings or telephone conversations it may be necessary to establish contact protocols with the participant – agreeing, for instance, particular times and numbers for telephone communication. Personal meeting may be best arranged on neutral territory away from the participant’s neighbourhood. Alternatively, meetings might be disguised by using facilities such as community centres, libraries or medical centres. Where this is not possible a public setting such as a cafĂ© or park may be appropriate.

“Making Things Better Not Worse …”

…researchers have a duty to ensure that no harm comes to their subject…as a result of their agreement to participate in the research. If we cannot guarantee that such participation may improve their lives, we must ensure, at least, that our scrutiny of them does not leave them worse off.

Melrose, M. 2002. ‘Labour Pains: Some Considerations on the Difficulties of Researching
Juvenile Prostitution’ in International Journal of Research Methodology 5(4), p.343

Discussion so far has focused on dangers to individuals and groups who are immediately involved in the research. However, research also has the potential to cause inadvertent harm to the general category of people that were studied, through the confirmation of negative stereotypes. This might arise, for instance, in studying the social experiences of homeless people, prostitutes, drug addicts, single mothers, asylum seekers, the long-term unemployed, ethnic minorities, or gay and lesbian people. In order to avoid, as far as possible, such negative consequences, researchers should focus on asking questions that illuminate the lives, cultures and situations of participants. For example, Canadian researcher Emily Paradis, in discussing her research with homeless women, writes:

…data were available whether the victim or assailant had been using drugs or alcohol at the time of the assault, but I believed that to study this area using only categorical data would erase the nuances and complexity of homeless women’s experiences of substance use, and risk perpetuating both stereotypes about homeless women and victim blaming cultures about sexual assault.
…homeless women are very vulnerable to harm as individuals, and as a community because of the extreme victimization, stigmatization and marginalization they endure.

Paradis, E. K. 2000. ‘Feminist and Community Psychology Ethics in Research with
Homeless Women’. American Journal of Community Psychology 28(6) pp. 844-45 & 854

Many researchers consider that their ethical obligation to vulnerable participants extends beyond mere avoidance of perpetuating established negative stereotypes. It can be seen as an ethical choice to effectively involve participants in the process of production of knowledge, thereby facilitating the creation of spaces where participants can feel empowered to negotiate and impact these processes.

Avoiding exploitation and causing of distress

Research can also cause harm to vulnerable participants through the feeling (or reality) of being exploited or through psychological and emotional distress from questioning about personally disturbing matters. Researchers need to be sensitive to both these issues.

The issue of unfair exploitation by researchers of vulnerable people in institutions is considered elsewhere (see ‘Informed Consent and Institutional Issues'). However, other categories of vulnerable individuals, who are subject to experiences of social marginalization, may also find it difficult to apply appropriate boundaries to their time and energy in relation to the requests of a researcher.

It may also be exploitative and unethical to undertake research with people experiencing grief and loss. Single-minded pursuit of the researcher’s agenda could leave such people distressed, disturbed and anxious, or with unwanted self-knowledge. Great care is needed in balancing the interests of research with those of the participant. The researcher should maintain sensitivity to the possibility that some potentially valuable avenues of questioning may be ‘ethically closed’, and back off if necessary. It should also be ensured that follow-up support is available if needed. However, it is also the case that participating in research can, under the right conditions, be therapeutic or cathartic. Some approaches to research – such as the narrative research method – which can be helpful in researching people experiencing grief and loss are set out under the ‘Conducting research and Dissemination’ tab.

 

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