It is important to note at the outset that ‘vulnerability’ is an imposed category that some ‘vulnerable’ groups would challenge. While this needs to be acknowledged, it is generally held that vulnerability is generally held to refer to those individuals or groups who, due to age, ill-health, infirmity, minority status or their otherwise disempowered position in society may be open to exploitation (whether physical, emotional or psychological). This and other issues related to vulnerability are discussed in more detail within this section.
Research with vulnerable populations challenges us to consider once again ethical principles basic to research. Issues of providing informed consent, maintaining confidentiality and privacy, weighing the risks and benefits of a study and paying attention to issues of fairness are all especially important when working with groups who are vulnerable.
Flaskerud, J.H. and B.J. Winslow. 1998.
‘Conceptualizing Vulnerable Populations in Health Related Research’
in Nursing Research 47(2), pp.69-78
All of the ethical dimensions, which are explored in the ‘Core Issues’ section, apply when working with vulnerable individuals and groups. However, some of these issues are more acute (especially anonymity and confidentiality). Additional dimensions also apply, with informed consent, taking care not to exploit participants and the situations of people in institutions all requiring special consideration. Moreover, the role of the research in defining and perpetuating vulnerability has to be taken into account, together with the positive duties of the researcher to those researched. The main issues covered under each of the subsections are set out below.
In this sub-section four main interacting ‘dimensions of vulnerability’ are set out and discussed:
- Vulnerable individuals.
- Vulnerable categories or groups; and vulnerability through group membership.
- Co-production of vulnerability.
- Vulnerable research environments.
The ethical importance of appreciating the co-production of vulnerability is emphasised, with particular reference to disability studies: the negative social constructions of ‘disablism’ are contracted with the positive constructions of the ‘emancipatory research’ tradition, wherein the researcher has an obligation to facilitate people with disabilities as participants in the co-production of positive understandings and outcomes.
This subsection explores the special issues applying to gaining informed consent when working with vulnerable individuals and groups. The following areas are explored:
- Issues regarding research with children, with emphasis on the importance of gaining informed consent from the children themselves (as well as from their legal guardians).
- Special issues applying when working with people with learning disabilities, suffering from senile dementia or other forms of diminished cognitive ability.
- Circumstances in which consent by proxy is necessary and justified, and the criteria for evaluating which people have the right to make decisions.
- The bearing that institutional dynamics have on gaining informed consent with particular reference to voluntarism and subtle or explicit pressures of compliance.
When conducting research with vulnerable people and groups honouring and protecting anonymity and confidentiality is especially important. Potential physical, emotional and social dangers to which participants could be exposed through participation are discussed. This subsection also points out the importance of avoiding:
- inadvertent reinforcement of negative social stereotypes concerning particular groups.
- unfair exploitation of vulnerable research participants.
- the causing of distress to people who have suffered traumatic events.
This subsection sets out strategies to ensure the wellbeing of vulnerable research participants during the course of the research. Practical issue regarding venues, people present and interviewing strategies are set out. Some methodologies for eliciting information about sensitive issues are discussed. The importance of not exploiting vulnerable people is revisited, with particular regard to avoiding ‘hit and run’ research. The ongoing ethical obligation to those researched is highlighted, with particular emphasis on dissemination of research results and other post-research activities beneficial to the group concerned.
The practice and ethics of social science research on disability, whether it has an experiential or any other focus, are topics of great importance in both disability studies and medical sociology, but disability studies’ concerns about the politics of research in the 1990s placed research activities centre stage. This sub-section draws on these debates to discuss the ethics and the research process in relation to disabled people.