Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...) sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data. (shrink)

This book provides a significant contribution to scholarship on the psychology of science and the psychology of technology by showcasing a range of theory and research distinguished as psychological studies of science and technology. Science and technology are central to almost all domains of human activity, for which reason they are the focus of subdisciplines such as philosophy of science, philosophy of technology, sociology of knowledge, and history of science and technology. To date, psychology has been marginal in this space (...) and limited to relatively narrow epistemological orientations. By explicitly embracing pluralism and an international approach, this book offers new perspectives and directions for psychological contributions. The book brings together leading theorists and researchers from around the world and spans scholarship across a variety of traditions that include theoretical psychology, critical psychology, feminist psychology and social constructionist approaches. Following a historical and conceptual introduction, the collection is divided into three sections: Scoping a New Psychology of Science and Technology, Applying Psychological Concepts to the Study of Science and Technology and Critical Perspectives on Psychology as a Science. The book will interest interdisciplinary scholars who work in the space of Science and Technology Studies and psychologists interested in the diverse human aspects of science and technology. (shrink)

Notwithstanding the numerous critiques that have been leveled at the field of positive psychology over its short history, the field and its practitioners continue to enjoy substantial growth and popularity. Although several factors have no doubt contributed to their advancement, work in the field of science studies suggests that rhetorical demarcation in scientific writing, by which scientific fields establish their domains and distinguish themselves from other forms of intellectual activity, may be equally significant. Such “boundary work” is an important means (...) through which fields defeat their competitors, persuade their public, and compete for legitimacy. In light of this, I examine the discursive demarcation and legitimization of positive psychology as performed through historical narratives of its origins in its own writings. I offer an analysis of the ways in which these narratives exploit alternating and contradictory images of scientists, legitimate scientific activity, and in particular, images of American society, to perform the ideological and rhetorical work of describing, and making visible, the kinds of issues and problems for which positive psychology presents itself as the natural solution. 2012 APA, all rights reserved). (shrink)