Toward a more public discussion of the ethics of federal social program evaluation

Federal social program evaluation has blossomed over the past quarter century. Despite this growth, there has been little accompanying public debate on research ethics. This essay explores the origins and the implications of this relative silence on ethical matters. It reviews the federal regulations that generally govern research ethics, and recounts the history whereby the evaluation of federal programs was specifically exempted from the purview of those regulations. Through a discussion of a recent evaluation that raised ethical concerns, the essay poses-but does not answer-three questions: (1) Are there good reasons to hold federal social program evaluations to different standards than those that apply to other research?; (2) If so, what ethical standards should be used to assess such evaluations?; and (3) Should a formal mechanism be developed to ensure that federal social program evaluations are conducted ethically? © 2005 by the Association for Public Policy Analysis and Management

Relational, Flexible, Everyday: Learning from Ethics in Dementia Research.

Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both "everyday" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research