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The primary purpose of Institutional Review Boards (IRBs) is to protect the rights and welfare of human research participants. Evaluation and measurement of how IRBs satisfy this purpose and other important goals are open questions that demand empirical research. Research on IRBs, and the Human Research Protection Programs (HRPPs) of which they are often a part, is necessary to inform evidence-based practices, policies, and approaches to quality improvement in human research protections. However, to date, HRPP and IRB engagement in empirical (...) research about their own activities and performance has been limited. To promote engagement of HRPPs and IRBs in self-reflective research on HRPP and IRB quality and effectiveness, barriers to their participation need to be addressed. These include: extensive workloads, limited information technology systems, and few universally accepted or consistently measured metrics for HRPP/irb quality and effectiveness. Additionally, institutional leaders may have concerns about confidentiality. Professional norms around the value of participating in this type of research are lacking. Lastly, obtaining external funding for research on IRBs and HRPPs is challenging. As a group of HRPP professionals and researchers actively involved in a research consortium focused on IRB quality and effectiveness, we identify potential levers for supporting and encouraging HRPP and IRB engagement in research on quality and effectiveness. We maintain that this research should be informed by the core principles of patient- and community-engaged research, in which members and key stakeholders of the community to be studied are included as key informants and members of the research team. This ensures that relevant questions are asked and that data are interpreted to produce meaningful recommendations. As such, we offer several ways to increase the participation of HRPP professionals in research as participants, as data sharers, and as investigators. (shrink)

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This article presents a critique of an article previously featured in Nursing Philosophy (10: 26–33) by Ursula Naue and Thilo Kroll, who suggested that people living with dementia are assigned a negative status upon receipt of a diagnosis, holding the identity of the ‘demented other’. Specifically, in this critique, we suggest that unwitting use of the adjective ‘demented’ to define a person living with the condition is ill-informed and runs a risk of defining people through negative (self-)attributes, which has a (...) deleterious impact upon that person's social and relational personae. Moreover, use of the locution ‘demented’ reinforces a divide between the ‘demented’ (them) and the ‘healthy others’ (us). Social constructionist theory, malignant positioning and viewing people with dementia as semiotic subjects are the philosophical pillars through which we construct the main arguments of the critique. The article concludes with the voice of one of the authors, a younger person with dementia, asking for language in dementia care to be carefully reconsidered and reframed and for the recognition of the diagnosed person's agency in the conduct of their day-to-day lives. (shrink)

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I propose that a sociological and historical examination of nanotechnologists can contribute more to an understanding of nanotechnology than an ontological definition. Nanotechnology emerged from the convergent evolution of numerous "technical knowledge communities"-networks of tightly-interconnected people who operate between disciplines and individual research groups. I demonstrate this proposition by sketching the co-evolution of computational chemistry and computational nanotechnology. Computational chemistry arose in the 1950s but eventually segregated into an ab initio, basic research, physics-oriented flavor and an industry-oriented, molecular modeling and (...) visualization, biochemical flavor. Computational nanotechnology arose in the 1990s as a synthesis of these two subgroups, infused by people and practices from computational materials science, engineering, computer science, and elsewhere. I show that to understand the aims and outcomes of computational nanotechnology-and nanotechnology more generally-we need to understand relationships between different, but related, nano knowledge communities and their dependence on particular practices, artifacts, and theories. (shrink)

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This analysis focuses on a particular sedimented construction of the child found in child development theory. In traditional developmental theory the child is conceptualized as being qualitatively different from the adult; the child is conceived as "other" and as an incomplete version of the adult. The historical roots of this construction of meaning are explored through examination of two influential contributors in the child development field, G. S. Hall and Jean Piaget. The source of Hall's conception of the "child-as-primitive" in (...) evolutionary theory is demonstrated, and the consequences of his romanticized view of the "primitive" child are examined. Piaget's stage approach to cognitive development is similarly analyzed, with an emphasis on the way in which his method of inquiry reflects the fundamental assumption of the child's incompleteness, and the on the use of the "child-as-primitive" image in his theory. Anthropological and philosophical contributions in this area are reviewed, and ethical consequences of the "primitive" notion are explored. Implications for phenomenological approaches to child development research and theory are offered, with emphasis on Merleau-Ponty's contributions in this area. (shrink)

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Population-based research is enhanced by biological measures, but biological sampling raises complex ethical issues. The third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3) will estimate the population prevalence of five sexually transmitted infections (STIs) (Chlamydia trachomatis, Neisseria gonorrhoeae, human papillomavirus (HPV), HIV and Mycoplasma genitalium) in a probability sample aged 16–44 years. The present work describes the development of an ethical approach to urine testing for STIs, including the process of reaching consensus on whether to return results. The (...) following issues were considered: (1) testing for some STIs that are treatable and for which appropriate settings to obtain free testing and advice are widely available (Natsal-3 provides all respondents with STI and healthcare access information), (2) limits on test accuracy and timeliness imposed by survey conditions and sample type, (3) testing for some STIs with unknown clinical and public health implications, (4) how a uniform approach is easier to explain and understand, (5) practical difficulties in returning results and cost efficiency, such as enabling wider STI testing by not returning results. The agreed approach, to perform voluntary anonymous testing with specific consent for five STIs without returning results, was approved by stakeholders and a research ethics committee. Overall, this was acceptable to respondents in developmental piloting; 61% (68 of 111) of respondents agreed to provide a sample. The experiences reported here may inform the ethical decision making of researchers, research ethics committees and funders considering population-based biological sampling. (shrink)

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Science studies scholars of the twenty-first century have been arguing for a reconceptualization of science based on the emergence of new values and practices. Allegedly, these new norms have come from science in the context of application. However, the argument here is that science in the context of application is a phenomenon with as long and rich a history as so-called pure or basic science. Science in the context of application only appears to be new since so little light has (...) been shined on applied science by historians and philosophers of science. This article explores the consequences of reaching back into remote history seeking science in the context of application and finds that doing so helps scholars understand present day developments, as well. Three examples of historical applied science are explored: ancient Roman engineering, Enlightenment-era navigation and surveying, and American early Republic engineering. In addition, the work of I. Bernard Cohen is examined for historiographical evidence of a narrowing account of what counts as science in the post-WWII period. (shrink)

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This paper tests the claims of cultural theory using the formation of climate change policies in Sweden, the United States, and Japan as case studies. The theory posits that any social group consists of three main cultural types: the egalitarian, the market -oriented, and the hierarchical. Though all groups contain elements of each type, one cultural type usually prevails, giving the group its unique decision-making character. This paper applies cultural theory at the national level, testing to what extent the theory (...) is able to project how countries will respond in addressing the issue of global warming. The results suggest that cultural theory may be useful to those involved in developing international agreements, enabling them to formulate regimes which are compatible with various cultural styles. (shrink)

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