Phoebe Friesen

Background Institutional Review Boards (IRBs) are federally mandated to include both nonscientific and unaffiliated representatives in their membership. Despite this, there is no guidance or policy on the selection of unaffiliated or non-scientist members and reports indicate a lack of clarity regarding members’ roles. In the present study we sought to explore processes of recruitment, training, and the perceived roles for unaffiliated and non-scientist members of IRBs.Methods We distributed a self-administered REDCap survey of members of the Association for the Accreditation of Human Research Protection Programs familiar with IRB member recruitment. The survey included closed and open-ended questions regarding: the operation of the HRPP/IRB(s), how unaffiliated and non-scientist members are recruited, whether they had faced challenges recruiting for these roles, and training and mentorship offered. The survey also collected information regarding the perceived value and roles of unaffiliated and non-scientist members.Results 76 responses were included in the analysis (38% completion rate). The most common approach for recruitment was referral from current IRB members, with almost half of respondents indicating challenges recruiting unaffiliated members. Over 75% indicated no additional training was provided to unaffiliated or non-scientist members compared to affiliated or scientist members. Most common supports provided were travel/parking expenses and honoraria. Commonly perceived roles were to provide an independent voice from the participant perspective, notably regarding consent processes and materials.Conclusions Respondents indicated challenges in defining unaffiliated and non-scientist members and limited practices toward recruitment and support. Future work should more closely examine the challenges in defining these roles and applying the definitions in practice, as well as strategies that may improve recruitment and retention of unaffiliated and non-scientist members.

According to the World Health Organization, female genital cutting affects millions of girls and women worldwide, particularly on the African continent and in the Middle East. This paper presents a plausible, albeit hypothetical, clinical vignette and then explores the legal landscape as well as the ethical landscape physicians should use to evaluate the adult patient who requests re-infibulation. The principles of non-maleficence, beneficence, justice, and autonomy are considered for guidance, and physician conscientious objection to this procedure is discussed as well. Analyses of law and predominant principles of bioethics fail to yield a clear answer regarding performing female genital cutting or re-infibulation on an adult in the United States. Physicians should consider the patient’s physical, mental, and social health when thinking about female genital cutting and should understand the deep-rooted cultural significance of the practice.

This paper examines the controversial diagnosis of excited delirium, which is often employed after individuals die during an encounter with the police. Rather than asking the important, and widely explored, question of whether the diagnosis is real or not, here, we consider how it operates in the world and why it seems to stick around, despite growing controversy and resistance to its use. First, we consider the question of what kinds of people are made up through the diagnosis of excited delirium, exploring how racial stereotypes are exploited and certain behaviors are engendered through the illness script offered by excited delirium. Next, we ask what work excited delirium doing is doing in the world, unpacking how it tends to justify force and redirect responsibility, as well as who is it serving, and who is it not benefitting. Finally, we interrogate the slippery logic of excited delirium, examining how the way it is employed renders it non-falsifiable, and therefore impossible to uncover as real or unreal.

In lieu of an abstract, here is a brief excerpt of the content:Excited DeliriumFalsifiability, Causality, and the Importance of AdvocacyArjun Byju, MD (bio) and Phoebe Friesen, PhD (bio)We want to begin by thanking both Kathryn Petrozzo and Paul B. Lieberman for taking the time to read and respond to our article, “Making Up Monsters, Redirecting Blame: An Examination of Excited Delirium,” so thoughtfully. They each offered us an opportunity to consider dimensions of excited delirium that we had not encountered as of yet and encouraged us to think more carefully about them. In our response, we consider each of their commentaries in turn, given that, as a philosopher and a psychiatrist, they each speak to different aspects of our argument.First, we turn to Kathryn Petrozzo’s commentary “Excited Delirium: The Self-Fulfilling Prophecy of Police Brutality.” We are grateful for her generous comments and careful engagement with our arguments. While much of the commentary is supportive of our piece, Petrozzo makes three critical and insightful points that we hope to respond to here.The first point Petrozzo makes is that our assertion that excited delirium is non-falsifiable is not supported. She suggests that those “seeking to exonerate the police/first responders responsible for these deaths, are not accepting this evidence leading them to reject the excited delirium diagnosis, but rather, are crafting an incorrect causal narrative. This is deeply problematic, but it does not necessarily render excited delirium as nonfalsifiable.”Although we are intrigued by this challenge, we would like to hear more about what it would look like to falsify the phenomenon of excited delirium. The way that the causal theories related to it are structured are such that if one causal factor is not present (e.g., drug use), then another causal factor can be located (e.g., mental health), and if that is not found, another may be simply made up (e.g., genetic predisposition), making excited delirium multiply realizable in a seemingly endless fashion. This is precisely what took place in the case of Anthany Dawson, who was initially said to have been experiencing a mental health crisis, but was later said to have died from excited delirium related to a genetic condition never identified before (Hon, 2004; Razack, 2015). [End Page 361]In practice, confirmations of excited delirium are found on the basis of various unrelated factors, such that after a death involving police force, there is almost always the option to reach for excited delirium as an explanation/exoneration. According to proponents, there is no factor that could be present that could rule out the diagnosis of excited delirium as it is currently constructed. Indeed, even in the presence of video evidence showing police officers choking an individual until they stop breathing, these deaths are still attributed to excited delirium. This seems like a clear instance of non-falsifiability.Although Petrozzo might maintain that this is simply “an incorrect causal narrative,” it is a causal narrative that aligns with the current theoretical scaffolding surrounding excited delirium.The second point Petrozzo makes is regarding widespread criticisms of Popper’s demarcation criterion of falsifiability. Indeed, this criterion has been called too inclusive, in that any empirical claim can be called falsifiable in principle—even if it refers to a future apocalypse or a UFO landing. It has also been criticized for being too exclusive, in that it ignores the “remarkable tenacity of scientific theories,” as Lakatos puts it (2009, p. 516). In practice, scientists do not merely abandon a theory if it is not supported by facts; they tend to find other explanations (e.g., the measurement was faulty) rather than accept an instance of falsification.Despite this, we believe it is still worth discussing falsifiability in the context of excited delirium for two reasons. First, while falsifiability may not be successful as a criterion that draws a line between science and pseudoscience, in this case, we argue, it still works well as a signifier of pseudoscience. Recently, many interested in the demarcation question have turned towards pluralism as a way to identify pseudoscientific practices (Pigliucci & Boudry, 2013). And excited delirium offers an excellent example of a phenomenon that bumps up against many of the features that might indicate a pseudoscientific practice...

Urban communities experiencing marginalization often disproportionately bear the risks and burdens of research and are left out of research ethics governance processes. To address this, many communities have created place-based and community-led research ethics governance initiatives to ensure that community voice is included in discussions surrounding research conduct. Place-based strategies in the Vancouver Downtown Eastside, the Bronx, and the Philadelphia Promise Zone successfully mobilize community perspectives in research ethics, filling in a significant gap in our current system of institutional research ethics review and oversight. These cases demonstrate that place-based research ethics governance has the potential to account for the community-level risks posed by research projects and to ensure communities receive more felt benefits. Place-based communities sidestep simplistic notions of identity based on single shared features and make space for intersectional analyses and diverse community viewpoints to be considered. Such communities have a unique claim to expertise given their shared experience of place, which grants them the ability to see problematic assumptions embedded in scientific projects as well as community-level concerns within research. Despite this, many marginalized communities are excluded from current research ethics oversight processes. This exclusion demands critical examination and a way forward to facilitate the integration of place-based community oversight strategies within research ethics governance.