Abstract

Informed consent in research among people with intellectual and developmental disabilities presents challenges for inclusive research—some particular to the IDD community, and some shared with other vulnerable populations. This essay uses my experiences with qualitative research among the IDD community to raise questions about our understanding of consent and about the principle of justice (given the deep-seated inequalities of power and privilege that may exist between a researcher and someone with IDD). I draw on Franklin Miller and Alan Wertheimer’s fair transaction model of informed consent (a response to Ruth Faden and Tom Beauchamp’s autonomous authorization model) to reflect on how structural issues of injustice affect the possibility of fairness in consent transactions with people with IDD. The work of inclusive research requires identifying structural and organizational avenues that can improve fairness in informed consent and assent, as well as improve justice for the IDD community more broadly.