Ethical issues of involving children with disabilities in research

From The Embassy of Good Science

Ethical issues of involving children with disabilities in research

What is this about?

By definition, children with disabilities are individuals under 18 years of age who have long-term physical, mental, intellectual or sensory impairments that, in combination with various barriers, may affect their full and effective participation in society on an equal basis with others. All this raises some ethical issues, connected to research, such as exclusion of children with disabilities, maladapted information giving, consent or assent and methodologies for data collection [1].

Why is this important?

Involving children with disabilities in research involves significantly more issues and dilemmas than when it comes to children in general. People with disabilities and especially children with disabilities have always been vulnerable group of people whose needs are often overlooked and expectations for them are put as low as possible. All this also transfers to research. Children with disabilities are sometimes deliberately or accidentally left out of research. Processes of information giving, consent or assent, and methodologies for data collection may be insufficiently adapted to be seen as truly disability inclusive. Also, researchers often come with wrong assumption about capabilities of children with disabilities to participate in research and value of their inclusion in research is not well understood.

For whom is this important?

What are the best practices?

Researchers must always consider mitigation strategies to overcome challenges that occur when it comes to involving children with disabilities in research and to do it in an ethical and respectful way. For meaningful participation, the individual capacities of each child involved must be considered at all stages of the research cycle, to ensure that processes are suitable for the diverse competencies, knowledge, interests, access, needs and contexts of all children involved.

Other information

  1. Thompson, Stephen; Cannon, Mariah; Wickenden M. Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation Knowledge, Evidence and Learning for Development (K4D) View project CBR guidelines pilot View project. 2020;(July):1–61.