Search

Among the Worora-speaking Aboriginal Australian people, in addition to the usual verbal expressions by which classificatory kinship is denoted, and the various contextual behaviors that index such categorial relations, kinship is experienced not only on the body, through a system of gestures, but as well as in the body, that is, through feelings in the musculature: hence kinship – one’s parents, etc. – is as well experienced parenterally. Cross-culturally, the adult human body constitutes what we might term both a diagrammatic model of other, generally macro-social aspects of the experienceable universe of phenomena, and as well a ‘natural’ origō or indexical centerpoint from which, in practices and in imaginative representations, a cultural actor can project a connection between the here-and-now and some encompassing social order. The Worora case is interesting precisely as it unites the two in both a topographical and parenteral experience of a system of classificatory kinship, reflexively experienced on and in the body.

The purpose of this Letter to the Editor is to discuss the recent paper, “Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research” by Ratto et al. Specifically, we are interested in further exploring the question of “who participates in autism spectrum disorder intervention research,” and how this question may impact interpretation of Ratto and colleagues’ paper.

Institutional review boards (IRBs) protect human research subjects by reviewing research to ensure compliance with federal regulations and institutional policies. One of the most important functions of IRBs is to ensure that investigators anticipate, plan for, and minimize risks to subjects. Under certain circumstances, however, participation in research may pose risks to nonsubject family members or other members of a subject's social network. In the context of a research protocol designed to test an intervention to prevent depression among a population of culturally diverse, urban mothers, we present two case studies of unanticipated problems, which demonstrate how nonsubject family members can either impact, or be impacted by, an individual's participation in research. The case studies illustrate the incongruence between federal regulations addressing IRB approval of research—which focus specifically on risks to subjects—and regulations on reporting incidents that occur during the conduct of the research, which extend to risks involving “others” as well. The cases also illustrate how risks to “others” can be accentuated in certain cultures where codependent family structures may increase the role that family members play in an individual's decision to participate in research. The question is raised as to whether this incongruence can inadvertently result in investigators and IRBs under-appreciating the risks that participation in research can pose to nonsubjects.

Academic institutions' requirements for ethics committee (IRB) review of research conducted by investigators from unaffiliated organizations engaged in collaborative, community-based research (CBR) may be highly variable. The present study examined the extent of this variability through a national survey of 196 IRB directors from US academic institutions. Fifty-three percent of respondents reported a formal policy or standardized approach to reviewing this type of CBR, with high volume IRBs more likely than low volume IRBs to do so (aOR 2.11, 95% CI 1.02, 4.35). The most common policy (40%) was to require that unaffiliated community organizations obtain a Federalwide Assurance on which they delegate responsibility for IRB review to their own (i.e., the academic institutions) IRB. Among IRBs without formal policies, 56% reported that human subject risk was their foremost consideration when reviewing CBR. Universities (71%) were more likely than medical schools (33%) to report subject risk as their foremost consideration (aOR 4.68, 95% CI 1.43, 15.28).