Ethical Considerations in Research with Children with Disabilities
Presentation led by Susan Etscheidt, Ph.D., Professor and Head, Special Education
Monday, March 27, 2017, 3:00-5:00 pm, Schindler Education Center 409
This session is focused on achieving the ethical ideals of autonomy, beneficence, and justice in research with students with disabilities. Several propositions and proposals will be presented …to hopefully generate some interesting discussion and questions.
Proposition 1: The traditional utilitarian approach to research which involves weighing the value and benefits of research and practice against the possible costs or harm to the participants may be insufficient to achieve those ethical ideals. You will be invited to consider alternative, ethical “Spheres”.
Proposition 2: A conclusion that we have met our ethical obligations through an initial, contractual agreement to obtain parental consent and child assent prior to research may obscure the ethical complexities that we encounter as we sustain interact with students with disabilities in research. You will be invited to consider a sustained assent and parental permission as well as informed dissent through the duration of research and educational practice.
Proposition 3: The attribution of children with disabilities as a homogeneous, vulnerable, need-to-be-protected, group may inadvertently restrict the child’s active and self-determined involvement in research and special education practices. This interpretation of vulnerability may reinforce a presumption of incompetence… an artifact of the medical model which views disability as a condition that must be overcome…research and practice should correct or normalize the child. ..in contrast to the social model of disability which views disability as a difference and not a deficiency. You will be invited to explore an alternative view of vulnerability – one that requires increased and sustained efforts to enhance child involvement in research.
The session will also include two proposals to address ethical issues in research involving students with disabilities. First, that parental permission and child assent must be sustained – and revisiting child assent in research. Second, the application of “nothing about us without us” should guide research with students with disabilities.