The ethical involvement of children with disabilities in evidence generation activities is a moral imperative that recognizes both children’s rights and their competencies. It is also vital for policy development and can lead to enhanced outcomes for children with disabilities and their families.
Children and young people with disabilities are frequently homogenized as a group, with insufficient recognition given to the multiple and intersecting aspects of their identities (Loveridge & Meyer, 2010) Children with different types and severities of impairment experience exclusion from evidence generation processes to differing degrees. Other intersecting factors, such as gender, ethnicity and geographical location, also have an impact on exclusion, depending on the context.
With regard to evidence generation involving children with disabilities in low- and middle-income countries, it is necessary to unpack, understand and reflect on its colonial underpinnings. Researchers from high-income countries may unwittingly import into these contexts their own culture-bound views of childhood, disability and ‘development’, resulting in a failure to capture or appreciate the diversity of experiences of children with disabilities or the cultural contexts for disabilities in different settings in which evidence takes place. A critical and transformative ‘decolonization’ of evidence generation should be pursued to address power imbalances and misinformation/misinterpretation. This necessitates that, in order for children with disabilities to be ethically involved in evidence generation processes, they must be listened to directly and respectfully. A decolonizing approach must be underpinned by the social model with a human rightslens. Disability must be understood as a status conferred by society and their environment that may generate barriers to social participation, thereby ‘disabling’ individuals with impairments.
For children with disabilities to be ethically involved in evidence generation activities, it is essential that inclusive practices are understood and are both responsive and sensitive. Children with disabilities must not be manipulated nor placed at risk by evidence generation processes. The right of children with disabilities to express their views and to be meaningfully heard should be incorporated into evidence generation practice at all levels.
The key frameworks of the Nuremberg Code (1948), the Declaration of Helsinki (1964) and the Belmont Report (1979) have provided the guiding principles for ethical evidence generation. The debate continues as to whether they offer sufficient guidance regarding cultural awareness, responsiveness, accountability, respondent validation of findings and increased consideration of research communication and uptake practices. The International Charter for Ethical Research Involving Children was launched in 2013, suggesting a series of researcher commitments to uphold the rights of all child participants, in all circumstances, while undertaking evidence generation. Its approach presents opportunities for researchers to consider appropriate methods and means for working with children in different contexts and with different types and severities of impairment, recognizing competencies as much as challenges and needs for adaptation.
For the involvement of children with disabilities in evidence generation activities to be ethical, the children must also find it a positive, helpful and enriching experience. A central ethical question for all evidence generation activities involving children with disabilities must be whether the potential benefits of involving them in evidence generation outweigh the risks. The exclusion of children with disabilities from such activities can lead to the perpetuation or instigation of substandard treatment, and poorer policy and programmatic outcomes for this group, as well as a poorer quality of evidence generation more generally.