A Case for Limiting the Reach of Institutional Review Boards

Institutional review boards (IRBs) governing social and behavioral research seem to systematically exceed the guidelines established by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. We examine a clandestine study of prostitution and another of employment discrimination and conclude that IRBs, more concerned about being sued than they are about protecting research subjects, get in the way of science and cause ethical problems as a consequence. We discuss the ethical principles involved and call for a suspension of all IRB review in the social and behavioral sciences.     

Citizen participation in neighborhood health centers for the poor: the politics of reform organizational change, 1965-77

Through a longitudinal study of neighborhood health centers for the poor in the United States, this paper presents an analysis of the political economy of change within reform organizations. In the final accounting, we seek to explain the shift in the role of poor people participating in health care decision making from that of program developer and change agent to the role of program restrictor. We conceptualize the neighborhood health center (NHC) as a reform organization whose initial objective was to use health care as a tool for achieving political and economic development within low-income rural and urban communities. The analysis, based on a prospective study of NHCs between 1965 and 1977, using interviews with citizen board members, NHC project administrators, NHC physicians, HEW decision elites, and oral history interviews with former Office of Economic Opportunity (OEO) administrators and directors, exemplifies the generic social organizational problem of how social, political, economic, and ideological forces shape the emergence and performance of a new reform organization.     

Privacy ethics in the age of disclosure: Sweden and america compared

Sweden, a model welfare state, and the United States, with its ethos of rugged individualism, have institutionalized ethical systems for protecting the research subject’s right to privacy. The ethical concerns driving these “codes” of ethics are similar across the two societies, but the institutional systems for protecting privacy, indeed the very definitions of privacy, are different, reflecting variant value systems. The Swedes have an open government but are vigilant and effective guardians of the privacy of individual files. In contrast, the Americans keep their government relatively closed but allow relatively easy access to individual files. Regardless of this basic difference, researchers in both countries are struggling to rethink their ethical systems in the face of rapid development of communications technology in what has emerged as the age of disclosure. This paper begins with the cultural concepts of privacy in Sweden and the United States. Privacy was chosen as the focus of this paper because it stands at the center of deception and disclosure in research, a pressing ethical problem facing sociologists today. Next is a comparison of the institutionalized systems for protecting the individual’s right to privacy in the two countries, followed by a discussion of the social pressures confronting the two systems. The paper concludes with a comparison of the ethical principles utilized by both countries. Kristina Freerks is an instructor of sociology in Sweden.     

Power and change: primary health care at the crossroads in Sweden.

This paper is based on in-depth interviews with members of Sweden's medical interest groups involved in a national effort to control health care costs. Sweden is faced with escalating costs due primarily to a growing high technology hospital sector. Simultaneously, consumer demand for primary care services and for gerontological care is rising rapidly. The Swedish way of changing the health care system is described and an analysis of the power struggle between physicians, health care bureaucrats and politicians is presented.