Research ethics and the use of visual images in research with people with intellectual disability

Abstract

The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in the use of visual methodologies, and rapid escalation in the numbers of digital images posted on the World Wide Web. Concern is raised about the possibility that tighter ethical regulation of social research, combined with the multitude of ethical issues raised by the use of image-based approaches may be discouraging the use of creative visual approaches in intellectual disability research. Inclusion in research through the use of accessible research methods is also an ethical issue, particularly in relation to those people who have hitherto been underrepresented in research. Visual approaches which have the potential to include people with profound and multiple intellectual disabilities are also discussed.

Characteristic interviews, different strategies

“…In all cases, this approach involved contacting both the person with intellectual disabilities and a support person to request that they provide consent together. A study by Boxall and Ralph (2009) supported these findings and indicated that service providers or other individuals with whom people with intellectual disabilities may be more familiar may be the most suitable people from whom to acquire satisfactory agreement. To ensure that the content of the research information is understood, it may also be beneficial to repeat the information several times and in different ways (Kittelsaa, 2010;Wennberg and Kjellberg, 2010), as in the author's study.…”

A neuroimaging proof of principle study of Down's syndrome and dementia: ethical and methodological challenges in intrusive research

“…This will be freely available online and will hopefully result in wider exposure to potential participants, as people with ID increasingly have access to health information through access to DVDs (Boyden et al . 2009), the Internet (Boxall & Ralph 2009) and other multimedia sources. Although we were satisfied with our chosen framework for assessing capacity, for a future study we will more rigorously document our assessment conversations with participants. Analysis of such material post hoc could highlight subtle but important strengths or weaknesses in a person's ability to understand or use the information.…”

Contraceptive choices for women with learning disabilities

“…As the international research community works to correct the past abuses of research participants, concerns have emerged that a protectionist mind set has taken hold, contributing to more conservative practice and posing new challenges for researchers working with people with learning disabilities (Iacono 2003(Iacono , 2006Boxall and Ralph 2009;. Grove (2002Grove ( , 2004 argues that deciding not to research with individuals who are deemed 'vulnerable' may actually increase their vulnerability because people will remain ignorant of their circumstances and treatment.…”

“…There are concerns that adults with learning disabilities may be needlessly excluded from research (Iacono, 2006;Lai et al, 2012) or at a greater risk of being subjected to harmful research (McDonald and Kidney, 2012). People with high support needs may be at particular risk of research exclusion due to concerns about demonstrating informed consent (Ledger, 2012) and difficulties in obtaining ethical approval for inclusive methodologies (Boxall and Ralph, 2009;.…”