•  1
    Community-led approaches to research governance: a scoping review of strategies
    with Emily Doerksen, Alize E. Gunay, and Scott D. Neufeld
    Research Ethics. forthcoming.
    Around the world, a growing number of communities are voicing their demands for authority in the governance of research involving them. Many such communities have experienced histories of exploitative, stigmatizing, intrusive research that failed to benefit them. To better understand what strategies communities are developing in order to have a say in research oversight, we conducted a scoping review of the international peer-reviewed and grey literature. Three primary strategies were identified…Read more
  •  7
    In lieu of an abstract, here is a brief excerpt of the content:Democratizing Psychiatric ResearchRecognizing the Potential and the Limits of Experiential ExpertisePhoebe Friesen, PhD (bio)First, I want to express my gratitude for such thoughtful and generative responses to the manuscript "Why Democratize Psychiatric Research?," which has been in development for several years and is the product of much reflection that has taken place in academic, advocacy, and interpersonal contexts. I am delight…Read more
  •  3
    Why Democratize Psychiatric Research?
    Philosophy, Psychiatry, and Psychology 31 (2): 117-133. 2024.
    Building on decades of rich discussions of why 'nothing about us without us' matters in the field of psychiatry, this paper aims to illuminate the justifications underlying participatory research in psychiatry, and how these justifications might shape participatory methodologies. This is accomplished through the examination of several epistemic and ethical features of psychiatry that underlie the importance of engaging in participatory research in the field, unpacking their connection to partici…Read more
  •  8
    In lieu of an abstract, here is a brief excerpt of the content:Democratizing Psychiatric ResearchRecognizing the Potential and the Limits of Experiential ExpertiseThe author reports no conflict of interests.First, I want to express my gratitude for such thoughtful and generative responses to the manuscript "Why Democratize Psychiatric Research?," which has been in development for several years and is the product of much reflection that has taken place in academic, advocacy, and interpersonal con…Read more
  •  9
    Why Democratize Psychiatric Research?
    Philosophy Psychiatry and Psychology 31 (2): 117-133. 2024.
    Building on decades of rich discussions of why 'nothing about us without us' matters in the field of psychiatry, this paper aims to illuminate the justifications underlying participatory research in psychiatry, and how these justifications might shape participatory methodologies. This is accomplished through the examination of several epistemic and ethical features of psychiatry that underlie the importance of engaging in participatory research in the field, unpacking their connection to partici…Read more
  •  47
    The Hopkins-Oxford Psychedelics Ethics (HOPE) Working Group Consensus Statement
    with Edward Jacobs, Brian D. Earp, Paul S. Appelbaum, Lori Bruce, Ksenia Cassidy, Yuria Celidwen, Katherine Cheung, Sean K. Clancy, Neşe Devenot, Jules Evans, Holly Fernandez Lynch, Albert Garcia Romeu, Neil Gehani, Molly Maloof, Olivia Marcus, Ole Martin Moen, Mayli Mertens, Sandeep M. Nayak, Tehseen Noorani, Kyle Patch, Sebastian Porsdam-Mann, Gokul Raj, Khaleel Rajwani, Keisha Ray, William Smith, Daniel Villiger, Neil Levy, Roger Crisp, Julian Savulescu, Ilina Singh, and David B. Yaden
    American Journal of Bioethics 24 (7): 6-12. 2024.
    Volume 24, Issue 7, July 2024, Page 6-12.
  •  25
    Is the Right to a Healthy Environment Enough? Reckoning with a History of Failures in Chemical Valley
    with Elsa Tanré, Katerina Carayannis, Isabella Braga, and Jean Pierre Abdallah
    American Journal of Bioethics 24 (3): 28-30. 2024.
    In “The Bioethics of Environmental Injustice: Ethical, Legal, and Clinical Implications of Unhealthy Environments,” Ray and Cooper (2024) advocate for environmental law efforts, with a focus on the...
  •  373
    The First Smart Pill: Digital Revolution or Last Gasp?
    Kennedy Institute of Ethics Journal 33 (3): 277-319. 2023.
    ABSTRACT: Abilify MyCite was granted regulatory approval in 2017, becoming the world’s first “smart pill” that could digitally track whether patients had taken their medication. The new technology was introduced as one that had gained the support of patients and ethicists alike, and could contribute to solving the widespread and costly problem of patient nonadherence. Here, we offer an in-depth exploration of this narrative, through an examination of the origins and development of Abilify, the d…Read more
  •  471
    This article identifies and examines a tension in mental health researchers’ growing enthusiasm for the use of computational tools powered by advances in artificial intelligence and machine learning (AI/ML). Although there is increasing recognition of the value of participatory methods in science generally and in mental health research specifically, many AI/ML approaches, fueled by an ever-growing number of sensors collecting multimodal data, risk further distancing participants from research pr…Read more
  •  25
    Making up Monsters, Redirecting Blame: An Examination of Excited Delirium
    with Arjun Byju
    Philosophy Psychiatry and Psychology 30 (4): 333-351. 2023.
    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 deliri…Read more
  •  21
    Excited Delirium: Falsifiability, Causality, and the Importance of Advocacy
    with Arjun Byju
    Philosophy Psychiatry and Psychology 30 (4): 361-365. 2023.
    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 …Read more
  •  17
    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 c…Read more
  •  24
    Acknowledging Complexity and Reimagining IRBs: A Reply to Discussions of the Protection–Inclusion Dilemma
    with Luke Gelinas, Aaron Kirby, David H. Strauss, and Barbara E. Bierer
    American Journal of Bioethics 23 (9): 1-8. 2023.
    We are grateful to everyone who took the time to offer such insightful comments with regard to the protection–inclusion dilemma in research oversight. Nearly all respondents agreed that this dilemm...
  •  39
    White Ignorance in Pain Research: Racial Differences and Racial Disparities
    Kennedy Institute of Ethics Journal 32 (2): 205-235. 2022.
    Racial disparities in pain treatment are well documented. Such disparities are explained with reference to factors related to providers, health care structures, and patient behaviors. Racial differences in pain experiences, although well documented, are less well understood. Explanations for such differences usually involve genetic or psychological factors. Here, we argue that racial differences in pain experiences might also be explained by disparities in pain treatment. Based on what we know a…Read more
  •  29
    Solidarity without Sovereignty: Extending the Belmont Principles Further?
    with Emily Doerksen and Alize Gunay
    American Journal of Bioethics 21 (10): 25-27. 2021.
    Saunkeah et al. argue that the principles of sovereignty and solidarity form the moral foundation for extending the Belmont Principles to tribal communities, by providing tribes with a right...
  •  47
    Public involvement in the governance of population-level biomedical research: unresolved questions and future directions
    with Sonja Erikainen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan, and Mark Sheehan
    Journal of Medical Ethics 47 (7): 522-525. 2021.
    Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to…Read more
  •  29
    A Cross Sectional Survey of Recruitment Practices, Supports, and Perceived Roles for Unaffiliated and Non-scientist Members of IRBs
    with Stuart G. Nicholls, Holly A. Taylor, Richard James, Emily E. Anderson, Toby Schonfeld, and Elyse I. Summers
    AJOB Empirical Bioethics 14 (3): 174-184. 2023.
    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 s…Read more
  •  48
    As participatory research practices are increasingly taken up in health research, claims related to experiential authority and expertise are frequently made. Here, in an exploration of what grounds such claims, we consider how feminist standpoint theory might apply to the psy sciences (psychiatry, psychology, psychotherapy, psychoanalysis, and so on). Standpoint theory claims that experiences of marginalization and critical engagement can lead to a standpoint that offers an epistemic advantage w…Read more
  •  42
    IRBs and the Protection-Inclusion Dilemma: Finding a Balance
    with Luke Gelinas, Aaron Kirby, David H. Strauss, and Barbara E. Bierer
    American Journal of Bioethics 23 (6): 75-88. 2022.
    Institutional review boards, tasked with facilitating ethical research, are often pulled in competing directions. In what we call the protection-inclusion dilemma, we acknowledge the tensions IRBs face in aiming to both protect potential research participants from harm and include under-represented populations in research. In this manuscript, we examine the history of protectionism that has dominated research ethics oversight in the United States, as well as two responses to such protectionism: …Read more
  •  29
    Consent for Intimate Exams on Unconscious Patients: Sharpening Legislative Efforts
    with Robin Fretwell Wilson, Soyoon Kim, and Jennifer Goedken
    Hastings Center Report 52 (1): 28-31. 2022.
    Hastings Center Report, Volume 52, Issue 1, Page 28-31, January/February 2022.
  •  50
    Birthing Alone: An Ethical Analysis of Pandemic Policies Banning Birthing Partners
    with Sarah Towle and Tamara Perez
    International Journal of Feminist Approaches to Bioethics 14 (2): 114-143. 2021.
    During the COVID-19 pandemic, several hospitals implemented “birthing alone” policies, banning companions from accompanying individuals giving birth. We offer an ethical analysis of these policies. First, we examine them through a consequentialist framework of risks and benefits. Second, we consider the significance of birth, highlighting the unique ways in which risks, relationships, and rights are understood in the context of obstetrics. We conclude that birthing alone policies are largely unj…Read more
  •  367
    Well before the COVID-19 pandemic, proponents of digital psychiatry were touting the promise of various digital tools and techniques to revolutionize mental healthcare. As social distancing and its knock-on effects have strained existing mental health infrastructures, calls have grown louder for implementing various digital mental health solutions at scale. Decisions made today will shape the future of mental healthcare for the foreseeable future. We argue that bioethicists are uniquely position…Read more
  •  62
    Ethics review of big data research: What should stay and what should be reformed?
    with Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, Marcello Ienca, and Agata Ferretti
    BMC Medical Ethics 22 (1): 1-13. 2021.
    BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical…Read more
  •  74
    Recommendations for Responsible Development and Application of Neurotechnologies
    with Sara Goering, Eran Klein, Laura Specker Sullivan, Anna Wexler, Blaise Agüera Y. Arcas, Guoqiang Bi, Jose M. Carmena, Joseph J. Fins, Jack Gallant, Jane E. Huggins, Philipp Kellmeyer, Adam Marblestone, Christine Mitchell, Erik Parens, Michelle Pham, Alan Rubel, Norihiro Sadato, Mina Teicher, David Wasserman, Meredith Whittaker, Jonathan Wolpaw, and Rafael Yuste
    Neuroethics 14 (3): 365-386. 2021.
    Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of int…Read more
  •  21
    Governing AI-Driven Health Research: Are IRBs Up to the Task?
    with Rachel Douglas-Jones, Mason Marks, Robin Pierce, Katherine Fletcher, Abhishek Mishra, Jessica Lorimer, Carissa Véliz, Nina Hallowell, Mackenzie Graham, Mei Sum Chan, Huw Davies, and Taj Sallamuddin
    Ethics and Human Research 2 (43): 35-42. 2021.
    Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model's origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be …Read more
  •  31
    Equitable Access to Research Benefits: Considerations for COVID-19 Vaccine Development and Clinical Trial Crossover
    with Danish Zaidi, Jennifer Miller, Tanvee Varma, and Dowin Boatright
    American Journal of Bioethics 21 (3): 86-88. 2021.
    COVID-19 vaccine research success and emergency use authorizations have shown the life sciences’ potential for positive health impact. But they also underscore potentially divergent and conf...
  •  30
    Transforming Bioethics: The Need for Strong Objectivity and Standpoints
    American Journal of Bioethics 21 (2): 58-60. 2021.
    In their target article, Zamina Mithani, Jane Cooper, and J. Wesley Boyd make a compelling case for the importance of “counter storytelling” in bioethics. They obse...
  •  965
    Ethical Issues in Text Mining for Mental Health
    In Morteza Dehghani & Ryan Boyd (eds.), The Atlas of Language Analysis in Psychology, Guilford Press. forthcoming.
    A recent systematic review of Machine Learning (ML) approaches to health data, containing over 100 studies, found that the most investigated problem was mental health (Yin et al., 2019). Relatedly, recent estimates suggest that between 165,000 and 325,000 health and wellness apps are now commercially available, with over 10,000 of those designed specifically for mental health (Carlo et al., 2019). In light of these trends, the present chapter has three aims: (1) provide an informative overview o…Read more
  •  65
    Pain, placebo, and cognitive penetration
    Mind and Language 36 (5): 771-791. 2021.
    There is compelling evidence that pain experience is influenced by cognitive states. We explore one specific form of such influence, namely placebo analgesia, and examine its relevance for the cognitive penetration debate in philosophy of mind. We single out as important a form of influence on experience that we termradical cognitive penetration,and argue that some cases of placebo analgesia constitute compelling instances of this phenomenon. Still, we urge caution in extrapolating from this to …Read more