Abstract
Look at most texts regarding research ethics and you will find reference to ‘vulnerable groups’, and if you look further you will usually see people with intellectual disabilities identified as one such group. However, to what extent does this serve to protect their interests or, conversely, does it become another source of marginalization and powerlessness. Fundamental to this discussion are questions concerning whether vulnerability is an inevitable consequence of having an intellectual disability and, if they are vulnerable, what it is that they are vulnerable to?
Historically, we can point to examples of situations in which people with intellectual disabilities were certainly vulnerable to coercion, exploitation and harm in the context of research (Juritzen et al., 2011). In such circumstances, it was often their relatively powerless position that was exploited such that they became the subjects of other people’s research without freely giving consent. Indeed, in some instances, they were more like objects of study rather than even attaining the status of subjects. Closer examination of such a situation, however, reveals that it arises not as an inevitable consequence of having an intellectual disability but rather due to the behaviour of others who fail to respect their right to exercise autonomy and enjoy freedom from harm.
When harm and exploitation are exposed, a common reaction is for safeguards to be put in place to try and prevent such situations from reoccurring. Whilst a response is required, however, it is important that it is proportionate and this has not always been the case in relation to people with intellectual disabilities in the context of research. From a situation in which they were viewed as subjects that could be researched without their consent, a shift occurred to considering everyone with an intellectual disability as being a ‘vulnerable’ subject. This resulted in numerous barriers being put in place to limit or even prevent their participation. Whilst ostensibly such measures were designed to protect, they are open to question and their unintended consequences also need to be acknowledged.
The key point of challenge relates to whether the term vulnerable can be applied to everyone who is deemed to have an intellectual disability. Those working in this field of practice understand that the label ‘intellectual disability’ encompasses a wide range of abilities and disabilities and that capacity to exercise autonomy and give consent are therefore extremely variable. Also, we now have a much better understanding of capacity and how it is not fixed: it can vary from situation to situation and is dependent on how information is presented and understanding is promoted. The application of the blanket label vulnerable therefore seems inappropriate since it ignores how the situation is influenced not only by the personal characteristics of potential participants but also by the actions of others: in this case the provision of timely and accessible information.
Whilst non-maleficence is a key ethical principle that needs to be upheld in the context of research, this is often confined to consideration of the potential for physical or psychological harm. However, there are other (possibly unintended) harms that may occur. Concerns regarding potential harms may lead to intellectual disability being cited as an exclusion criterion in some studies. This in turn means that access to certain interventions (that may be beneficial) can be denied to people with intellectual disabilities as they are only available via participation in research. It may also mean that key aspects of their lives go unexamined and this gives rise to the potential for existing harms to go unquestioned and unchallenged (e.g., see the article in this edition by Leutar et al. who examine the experience of abuse). Seeking to protect people from harm in the context of research may itself therefore give rise to harm, and McDonald and Kidney (2012) argue that a further form of vulnerability that needs to be considered is vulnerability to exclusion from research participation.
Such exclusion means that the views and experiences of people with intellectual disabilities are not heard: their voices are silenced. When such research relates specifically to key aspects of their lives, this further reinforces powerlessness and marginalization and compounds existing injustices. Clearly, appropriate ethical safeguards are needed in order to prevent previous harm from recurring but in seeking to do this we need to ensure that new harms are not created.
Things are changing and there is greater realization of how the behaviour of researchers and their approach to research can be changed in order to safeguard the rights of people with intellectual disabilities whilst also supporting their right to participate in research if they wish to do so and they have the capacity to make that decision. However, it is still not unusual for researchers to encounter challenges when seeking to secure ethical approval for studies where members of ethics committees have little experience of interacting with people with intellectual disabilities and who may, therefore, view all people with intellectual disabilities as inherently vulnerable. Those of us working in this field thus have a responsibility not only to advocate for the right of people with intellectual disabilities to participate in research but also to educate others that autonomy can be respected, beneficence may be achieved, and justice promoted whilst also ensuring non-maleficence.