•  24
    What Do Psychiatrists Think About Caring for Patients Who Have Extremely Treatment-Refractory Illness?
    with Jennifer Blumenthal-Barby, Peter A. Ubel, Bryanna Moore, Ryan Nelson, and Brent M. Kious
    American Journal of Bioethics Neuroscience 15 (1): 51-58. 2024.
    Questions about when to limit unhelpful treatments are often raised in general medicine but are less commonly considered in psychiatry. Here we describe a survey of U.S. psychiatrists intended to characterize their attitudes about the management of suicidal ideation in patients with severely treatment-refractory illness. Respondents (n = 212) received one of two cases describing a patient with suicidal ideation due to either borderline personality disorder or major depressive disorder. Both pati…Read more
  •  22
    Privacy Protections in and across Contexts: Why We Need More Than Contextual Integrity
    with Sara Goering, Asad Beck, Sofia Schwarzwalder, and Nicolai Wohns
    American Journal of Bioethics Neuroscience 15 (2): 149-151. 2024.
    Do we need a right to mental privacy? In an era of increasing sophistication in recording, interpreting, and directly intervening on our neural activity – not to mention efforts at combining neural...
  •  16
    Adolescent OCD Patient and Caregiver Perspectives on Identity, Authenticity, and Normalcy in Potential Deep Brain Stimulation Treatment
    with Jared N. Smith, Meghan Hurley, Ilona Cenolli, Kristin Kostick-Quenet, Eric A. Storch, Gabriel Lázaro-Muñoz, and Jennifer Blumenthal-Barby
    Cambridge Quarterly of Healthcare Ethics 1-14. forthcoming.
    The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with a…Read more
  •  25
    Research on the Clinical Translation of Health Care Machine Learning: Ethicists Experiences on Lessons Learned
    with Jennifer Blumenthal-Barby, Benjamin Lang, Holland Kaplan, William B. Hooper, and Kristin Kostick-Quenet
    American Journal of Bioethics 22 (5): 1-3. 2022.
    The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...
  •  38
    Perspectives on informed assent and bodily integrity in prospective deep brain stimulation for youth with refractory obsessive-compulsive disorder
    with Jared N. Smith, Meghan Hurley, Ilona Cenolli, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A. Storch, and Jennifer Blumenthal-Barby
    Clinical Ethics. forthcoming.
    BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...
  •  24
    Hope and Optimism in Pediatric Deep Brain Stimulation: Key Stakeholder Perspectives
    with Lilly Snellman, Ynez Kerley, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A. Storch, and Jennifer Blumenthal-Barby
    Neuroethics 16 (3): 1-15. 2023.
    IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystoni…Read more
  •  12
    A Call for Behavioral Science in Embedded Bioethics
    with Kristin M. Kostick-Quenet, Benjamin Lang, and J. S. Blumenthal-Barby
    Perspectives in Biology and Medicine 65 (4): 672-679. 2022.
    ABSTRACT:Bioethicists today are taking a greater role in the design and implementation of emerging technologies by "embedding" within the development teams and providing their direct guidance and recommendations. Ideally, these collaborations allow ethical considerations to be addressed in an active, iterative, and ongoing process through regular exchanges between ethicists and members of the technological development team. This article discusses a challenge to this embedded ethics approach—name…Read more
  •  721
    The New Hysteria: Borderline Personality Disorder and Epistemic Injustice
    International Journal of Feminist Approaches to Bioethics 16 (2): 162-181. 2023.
    The diagnostic category of borderline personality disorder (BPD) has come under increasing criticism in recent years. In this paper, we analyze the role and impact of epistemic injustice, specifically testimonial injustice, in relation to the diagnosis of BPD. We first offer a critical sociological and historical account, detailing and expanding a range of arguments that BPD is problematic nosologically. We then turn to explore the epistemic injustices that can result from a BPD diagnosis, showi…Read more