About

Justin T Clapp, Ph.D., M.P.H., is an Assistant Professor of Medical Ethics and Health Policy at the Hospital of the University of Pennsylvania. He is a Senior Fellow at the Center for Public Health Initiatives (CPHI), a Senior Fellow at the Leonard Davis Institute of Health Economics, and a Senior Scholar at the Penn Center for Perioperative Outcomes Research and Transformation (CPORT). He is also an affiliated faculty member at the Palliative and Advanced Illness Research Center (PAIR). His academic department is Medical Ethics and Health Policy. Dr. Clapp's educational background includes a B.A. in Literature from the College of William and Mary (2006), a Ph.D. in Anthropology from the University of Pennsylvania (2012), and an M.P.H. in Public Health from the University of Pennsylvania (2017). His research focuses on bioethics, health policy, and medical ethics, with contributions to understanding language in bioethics, decision-making in serious illness, and interdisciplinary collaboration in healthcare.

Research topics

• Medicine
• Internal medicine
• Physical therapy
• Pathology
• Family medicine
• Philosophy
• Nursing
• General surgery
• Surgery
• Psychology
• Epistemology
• Cognitive science

Selected publications

• Parent perspectives on neonatal research without prior consent: a mixed-methods interview study

  BMC Medical Ethics · 2026-04-10 · 1 citations

  articleOpen access

  Recruitment for clinical research in the neonatal intensive care unit (NICU) is difficult, which may lead to low enrollment rates, systematically skewed samples, and nongeneralizable results. Research without prior consent (RWPC), defined as obtaining consent only after infants have been randomized to a treatment arm, may improve enrollment but raises ethical challenges. There is a need to better understand how parents with lived experience of having an infant in the NICU consider RWPC’s impact on critical ethical values related to informed consent, including decision-making, respect, and trust. This mixed-methods study aimed to describe parental perceptions of the acceptability and ethical implications of RWPC for neonatal clinical research. Interviews were conducted with parents of infants recently admitted to the NICU across 6 US locations. Parents were asked a series of Likert-scale questions followed by open-ended questions with interactive probes about the acceptability of hypothetical study vignettes using either prospective informed consent or RWPC. Likert-scale responses were analyzed using mixed-effects linear regression models. Open-ended responses were inductively coded and thematically analyzed through a constructivist lens. Parents (n = 38) scored the acceptability of RWPC vignettes lower than prospective informed consent vignettes on mean adjusted total score and items about perceived control, values-aligned decision-making, and respect for babies and families. Four themes were identified as impacting parents’ views on acceptability of RWPC: (1) equipoise as the foundation for acceptability of consent approaches, (2) informational preferences for consent approaches, (3) complex interplay between consent approaches and research relationships, and (4) consent approaches as shaping perceived control. Parents’ perspectives illustrate key considerations for the potential use of RWPC as well as broader reflections on engagement about clinical research in the NICU setting. Situational factors in the NICU raise barriers to consent, and RWPC may be differentially acceptable depending on study specifics. Thoughtful communication about equipoise and attention to trust are essential when considering alternative methods of consent. Future research should further examine ethical trade-offs involved in RWPC and varied perceptions across study features.

  PublisherDOI

• Telehealth and Intervention Stigma: Patient Perspectives About Flexible Opioid Use Disorder Treatment Delivery

  Substance Use &amp Addiction Journal · 2026-02-23 · 1 citations

  articleOpen access

  Background: While medications for opioid use disorder (MOUD) are widely considered the “gold standard” of opioid use disorder (OUD) care, more than 80% of people with OUD receive no treatment; of those who do receive care, less than half receive MOUD. Stigma is a major impediment to both OUD treatment in general and MOUD in particular. Recent scholarship has documented how particular medical interventions can themselves become the target of “intervention stigma” distinct from the “condition stigma” often attached to stigmatized medical conditions or patient populations. Telehealth, which has become a more viable and popular option for delivering MOUD since the onset of the COVID-19 pandemic, can potentially alleviate some of the stigma patients face when accessing in-person care, but also may itself be subject to particular forms of stigma. While telehealth offers an opportunity to provide lower-barrier, more accessible care, its uptake as a treatment modality depends on its acceptability to patients and providers. Methods: This qualitative, interview-based study of 25 patients with OUD in Philadelphia, Pennsylvania, explores patient experiences with and perceptions of OUD treatment and telehealth for MOUD, with a focus on how patients compare different treatment modalities and their beliefs about the effectiveness and appropriateness of telehealth for MOUD. Results: We explore how ideas about drug dependence and treatment inform opinions about MOUD and telehealth, generating a distinct form of “intervention stigma” around this modality of care. We show how assumptions about people who use drugs combine with the technical affordances and limitations of telehealth to compound stigma above and beyond the stigma directed at MOUD generally. Conclusion: While previous research about telehealth MOUD suggests that it is as effective as in-person care and reduces important barriers to treatment, this form of intervention stigma may negatively impact patient perceptions about its appropriateness and effectiveness.

  PublisherOA PDFDOI

• Expert consensus on communicating tau PET results to persons living with MCI or dementia: Findings from a modified Delphi study

  Alzheimer s & Dementia · 2026-04-01

  articleOpen access

  INTRODUCTION: There is interest in incorporating tau imaging into clinical care because it provides unique diagnostic and prognostic information. Yet, clinicians lack guidance on communicating results. METHODS: We conducted a modified Delphi process with practicing US-based expert clinicians in human tau imaging. Expert clinicians were interviewed to elicit input on best practices for communicating tau positron emission tomography (PET) results to cognitively impaired patients. These data were used to develop candidate practices and statements, which expert clinicians rated across two online survey rounds. RESULTS: Eighteen expert clinicians completed interviews and both surveys. They reached consensus on 12 practices - like showing individuals their tau PET scan images - and eight statements for communicating tau PET results - one for tau alone, three for concordant amyloid and tau results, and four for discordant amyloid and tau results - to cognitively impaired patients. DISCUSSION: This study provides novel consensus recommendations for communicating tau PET results to cognitively impaired patients.

  PublisherDOI

• How Neonatologists Use Genetic Information

  The Journal of Pediatrics · 2025-02-13 · 1 citations

  articleOpen access
  PublisherOA PDFDOI

• Patient and Provider Experiences With Opioid Use Disorder Care Delivered via Telehealth: A Systematic Mixed-Studies Review

  Drug and Alcohol Dependence · 2025-02-01 · 1 citations

  article
  PublisherDOI

• Mapping the Landscape of Medical Venture Philanthropy

  AJOB Empirical Bioethics · 2025-10-02

  article

  BACKGROUND: A number of patient organizations have recently embraced venture philanthropy, a model of patient advocacy that purports to use practices from venture capitalism in pursuit of philanthropic goals. However, a clear understanding of what venture philanthropy entails and what these organizations do remains elusive, hindering efforts to assess ethical implications of the model's growth. METHODS: We conducted a qualitative content analysis of self-reported profiles of 130 organizations in an affinity network promoting principles of venture philanthropy. We analyzed organizations' research goals, funding strategies, activities, and patient engagement efforts. RESULTS: Despite finding substantial variation in age, revenue, and disease focus, we identified shared assumptions and approaches that represent defining characteristics of venture philanthropy. First, organizations consistently present facilitating the development of new therapies as the most urgent need for patients. Second, organizations participate in financing and managing research across the development pipeline, rather than focusing on basic research as many patient organizations historically have done. Third, organizations seek to position themselves within established research and drug development networks, fostering collaborative relationships with key stakeholders, including pharmaceutical companies. We also find that some of the most transformative practices associated with venture philanthropy, such as direct investment in for-profit companies, remain relatively uncommon. CONCLUSIONS: Venture philanthropy represents an evolution in the ambitions and activities of patient organizations, with organizations becoming more fully enmeshed in the drug development process. Our findings raise ethical questions about how patient organizations conceptualize and advance patient interests and about tradeoffs inherent to the venture philanthropy model.

  PublisherDOI

• A Qualitative Study on Surgeon Perceptions of Risk Calculators in Emergency General Surgery

  Annals of Surgery Open · 2025-04-21

  articleOpen access

  Objective: To understand how surgeons perceive risk calculators in emergency general surgery (EGS). Background: EGS involves complex decision-making of operative and nonoperative management. Risk calculators can aid in shared decision-making and informed consent. Methods: We performed semi-structured interviews among emergency surgeons within 1 healthcare system to explore perceptions of risk calculators in EGS. Interviews were completed until thematic saturation, transcribed, coded in duplicate, and analyzed using inductive analysis within a modified grounded theory framework to generate theory regarding surgeon perceptions of risk calculators in EGS. Results: Among 20 interviewees, the mean age was 45. We identified dominant themes related to the concerns of and benefits of using risk calculators within EGS, both in situations of clear and unclear best treatment options. Surgeons questioned risk calculator validity and noted that a lack of health numeracy can limit their use. Risk calculators were seen as helpful for communication, consensus building, informed consent, and litigation mitigation. The ideal risk calculator should have low activation energy for use, incorporate relevant data and accurate prognostication, and provide actionable, easily interpretable output. Education for providers and patients on risk calculator availability and use is necessary. Conclusions: Although surgeons may initially question the data produced by risk calculators in EGS, they identify several potential virtues to their bedside use when optimal treatment options are and are not clear. The ideal risk calculator for use in EGS should be convenient and relevant. Future studies are needed to explore patient perceptions and to directly observe patterns of risk calculator use.

  PublisherDOI

• Reframing the Ethics of Prenatal Testing: From Autonomy to Social and Societal Implications

  The American Journal of Bioethics · 2025-11-18 · 1 citations

  articleSenior author
  PublisherDOI

• Discussion of the Fetus in Fetal Cardiology Consultations: A Qualitative Study

  Children · 2025-09-10

  articleOpen access

  Background: While prenatal diagnosis of congenital heart disease is increasingly common, and communication is essential to minimizing familial stress, little is known about how the fetus is discussed in this setting. This study observed how clinicians and families refer to the fetus during initial fetal cardiology consultations. Methods: Initial fetal cardiology consultations from one institution were recorded and transcribed verbatim. A codebook was developed and used to code the transcripts. Codes included any reference to the fetus and any attribution of agency or mental states to the fetus. Results: Nineteen consultations performed by five clinicians from one academic institution were included. Clinicians and families most frequently referred to the fetus using personal terminology (e.g., third-person pronouns, a given name, or “son” or “daughter”). Impersonal terminology (e.g., “baby”) was used less frequently, followed by medical terminology (e.g., “fetus”), which was only used in two consultations. In about half of the consultations, clinicians conferred agency or mental states on the fetus by attributing actions, emotions, or knowledge to the fetus. Conclusions: Fetal cardiology clinicians primarily use personal terminology when referring to the fetus during initial consultations. Familial preferences need to be evaluated to optimize communication and support.

  PublisherOA PDFDOI

• Further Beyond the Representational View: Response to Commentaries

  The American Journal of Bioethics · 2025-04-03

  article1st authorCorresponding
  PublisherDOI

Frequent coauthors

• Arti Hurria

  City Of Hope National Medical Center

  64 shared

• Judith L. Hopkins

  Novant Health

  64 shared

• Myra F. Barginear

  Long Island Jewish Medical Center

  64 shared

• Rachel A. Freedman

  Dana-Farber Cancer Institute

  64 shared

• Gretchen Kimmick

  Cancer Institute (WIA)

  64 shared

• Jacqueline M. Lafky

  Mayo Clinic

  64 shared

• Heidi D. Klepin

  Atrium Health Wake Forest Baptist

  64 shared

• Aminah Jatoi

  Mayo Clinic in Arizona

  64 shared

Labs

• Justin T Clapp LabPI