残障研究方法与研究伦理Carlson-Research ethics and intellectual disability.pdfVIP

YALE JouRnAL oF BIoLoGY AnD EDICInE 86 (2013), pp.303-314. Copyright © 2013. FoCuS: RESEARCh AnD CLInICAL EThICS research Eth cs and intellectual d sab l ty: Broaden ng the debates Licia Carlson, PhD Associate P ofesso of Philosophy, P ovidence College, P ovidence, Rhode Island This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and bene- fits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights ovement and critical disability scholarship. These ten- sions are defined as the double dangers of inclusion and exclusion; the challenges of defin- ing competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these ten- sions are not resolved, they underscore the importance of researchers engaging with criti- cal disability perspectives in order to navigate these complex ethical questions. introduction ity; from the dangers of exploitation to the injustices of exclusion. Moreover, the cate- Including people with intellectual and gory “intellectual disability” casts a wide net developmental disabilities (ID†) in medical and encompasses individuals with a broad research raises many ethical issues. Difficult range of abilities and disabilities, thus com- questions emerge on multiple fronts: from plicating efforts to speak about “people with determining competence to the problem of ID” as a single, uniform group. For the pur- who should serve as a surrogate decision poses of my discussion here, I will define ID maker; from articulating appropriate defini- as a categ