Competency, Capacity, and Consent: Navigating the Institutional Review Board as Disability Studies in Education–Informed Educational Researchers

• In Event: Addressing Intersecting Oppressions in Institutional Review Board Processes: Constraints, Strategies, and Future Directions

Abstract

Purposes
The Institutional Review Board (IRB) process was established to protect the rights of human subjects engaged in research studies (Stark, 2012). Prior to the implementation of the IRB, people of color and disabled people were specifically targeted, harmed, and even killed as a result of unethical research experiments (Goode et al., 2013). Given this history, the role of the IRB as an essential ethical check to all human subject research remains an integral part of receiving approval to conduct research with human subjects. In this paper both co-authors share their own lived experiences navigating the IRB process when conducting research with youth and adults who are identified with the label of disability (more specifically autism and intellectual disability). Throughout the IRB process at a Northeastern college for teaching, both authors navigated the application process, which included a full board review. Often, the feedback on each author’s IRB application included asking for changes that were steeped in medicalized understandings of disability that appeared both static and paternalistic.

Perspectives
In this paper we draw from the Disability Studies in Education (DSE) framework to first define and identify the ableist approaches and language that were used during the IRB application process at our shared institution. Each author shares a brief snippet of their individual project, Author 1, conducting research with autistic women and Author 2, conducting research with disabled youth and court involved youth. Drawing from the work of DSE scholars such as Goodley (2010) and Disability Justice community scholars (cf. Piepzna-Samarasinha, 2018) we then imagine possibilities for developing a process of ethical consent for research with human subjects that presumes competence and is oriented towards capacity (Simplican, 2015) and capability (Kittay, 2019; Nussbaum, 2006).

Discussion
As the Disability rights movements continue to advocate for the full rights of citizens labeled disabled, there remains vestiges of institutional practices, once meant to protect. By drawing from recent work in the fields of DSE (Goodley, 2010; Nussbaum, 2006) and Carework (Piepzna-Samarashinha, 2018) this paper addresses the questions: What happens when a system meant to protect, and support people’s rights questions the competency of disabled people? And how could the IRB process be reimagined to allow for more fluid notions of disability and create more accessible pathways to meaningful participant consent? Through auto-ethnographic and narrative analysis (Kim, 2016) methods the authors attend to their own moves through participating in the IRB process and offer reflection on how language and deeply rooted ableist understandings of terms such as “normal” and “consent” were wrapped up in assumptions about intelligence and by extension ability and disability. The authors push for a reimagining of the consent process which goes beyond fixed medicalized definitions of “competent to consent” vs. “not competent to consent”. Instead we ask how notions of interdependence (Barton, 1989; Caldwell, 2014; Kittay, 2011) and webs of care (Piepzna-Samarashinha, 2018) could be incorporated into the IRB process so that members of the disability community can be more meaningfully represented in research.

Authors

• Katherine Newhouse, New York University

• Rae Leeper, Bank Street College of Education