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Dignitary and other intangible harms in clinical research

February 17, 2016

Can research subjects be “wronged” even if not physically injured in a clinical trial? Thorny questions of how to account for such intangible harm currently challenge the courts, regulatory agencies, and IRBs. This presentation will consider the legal, ethical, and policy implications of noteworthy cases involving intangible harm, including alleged breach of dignitary rights, abrupt … Continued

Paying research “volunteers”

February 17, 2016

Compensating research participants has been the subject of national debate for some time. In this presentation, I will review the four most common approaches to paying research participants and critically evaluate the impact of these schemes with relation to the risk:benefit ratio in research. I will also present the growing empirical literature on the varying … Continued

The ethics of clinical research during an epidemic

February 17, 2016

The 2014 Ebola epidemic in west Africa is the most severe and largest documented to date. It is also the first epidemic in which the use of experimental vaccines and specific treatments for Ebola was endorsed at an early stage. This talk will draw lessons from Ebola for conducting clinical research during an epidemic, with … Continued

Should we take the moral concerns of biobank donors seriously?

February 17, 2016

Biobanking is becoming an increasingly important component of genomic and medical research. President Obama’s Precision Medicine Initiative ― which proposes the collection of genetic and clinical data for upwards of 1 million Americans ― is just one example of this trend in medical science.  Because biobanks depend upon donations from a willing public, it is important that potential … Continued

Join the Conquest

February 17, 2016

Clinical trial recruitment is in crisis. The public typically encounters clinical trial information in controversies or study-specific recruitment ads, which limits full understanding. To help address the national clinical trial recruitment crisis, researchers at UNC-CH used the social marketing approach to develop an evidence-based, online clinical research website and registry called Join the Conquest. This … Continued

Rules, rebels and scientific integrity

October 22, 2015

Most courses and texts on the responsible conduct of research imply that the professional ethical norms they teach also facilitate the best science. But we love rule—breakers, rebels, and “disruptive” innovators in science. What is the relation between the ethical values behind concern s over scientific misconduct and the intellectual virtues we praise in creative … Continued

Handling research animal ethics

October 21, 2015

Research on animal welfare is organized around a distinction between the care of animals and their use in experiments. Nicole Nelson draws on ethnographic fieldwork in a behavioral neuroscience laboratory to complicate this presumed division between science and welfare. Using the case study of animal handling, she explores how scientists use animal welfare concepts to … Continued

Automatic placement of genomic research results in medical records

October 2, 2015

In genomics research, it is becoming common practice to return individualized primary and incidental findings to participants and several ongoing major studies have begun to automatically transfer these results to a participant’s clinical medical record. This presentation will explore who should decide whether to place genomic research findings into a clinical medical record. Should participants make this decision … Continued