Publications
SCBE faculty and fellows publish often in leading journals. SCBE is also home to the editorial office of the American Journal of Bioethics (AJOB).
Publications
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Loss of access to legal abortion in America: history, implications, and action items for anesthesiologists.
Anaesthesia, critical care & pain medicine
2022: 101125
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View details for DOI 10.1016/j.accpm.2022.101125
View details for PubMedID 35803575
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Parents Demand and Teenager Refuses Epidural Anesthesia.
Pediatrics
2020
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Abstract
A 15-year-old girl is scheduled to undergo an upper lobectomy to debulk metastatic Ewing sarcoma. The anesthesiologist recommended placement of a thoracic epidural catheter to provide postoperative analgesia. The patient did not want a needle to be placed near her spine. She was terrified that the procedure would be painful and that it might paralyze her. Although the anesthesiologist reassured her that sedation and local anesthesia would make the procedure comfortable, she remained vehemently opposed to the epidural procedure. The parents spoke privately to the anesthesiologist and asked for placement of the epidural after she was asleep. They firmly believed that this would provide optimal postoperative analgesia and thus would be in her best interest. Experts discuss the pros and cons of siding with the patient or parents.
View details for DOI 10.1542/peds.2019-3295
View details for PubMedID 32398328
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The opioid crisis should lead pediatric anesthesiologists to a broader vision of opioid stewardship.
Paediatric anaesthesia
2019; 29 (11): 1078–80
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View details for DOI 10.1111/pan.13730
View details for PubMedID 31677337
Publications
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A framework to identify ethical concerns with ML-guided care workflows: a case study of mortality prediction to guide advance care planning.
Journal of the American Medical Informatics Association : JAMIA
2023
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Abstract
Identifying ethical concerns with ML applications to healthcare (ML-HCA) before problems arise is now a stated goal of ML design oversight groups and regulatory agencies. Lack of accepted standard methodology for ethical analysis, however, presents challenges. In this case study, we evaluate use of a stakeholder "values-collision" approach to identify consequential ethical challenges associated with an ML-HCA for advanced care planning (ACP). Identification of ethical challenges could guide revision and improvement of the ML-HCA.We conducted semistructured interviews of the designers, clinician-users, affiliated administrators, and patients, and inductive qualitative analysis of transcribed interviews using modified grounded theory.Seventeen stakeholders were interviewed. Five "values-collisions"-where stakeholders disagreed about decisions with ethical implications-were identified: (1) end-of-life workflow and how model output is introduced; (2) which stakeholders receive predictions; (3) benefit-harm trade-offs; (4) whether the ML design team has a fiduciary relationship to patients and clinicians; and, (5) how and if to protect early deployment research from external pressures, like news scrutiny, before research is completed.From these findings, the ML design team prioritized: (1) alternative workflow implementation strategies; (2) clarification that prediction was only evaluated for ACP need, not other mortality-related ends; and (3) shielding research from scrutiny until endpoint driven studies were completed.In this case study, our ethical analysis of this ML-HCA for ACP was able to identify multiple sites of intrastakeholder disagreement that mark areas of ethical and value tension. These findings provided a useful initial ethical screening.
View details for DOI 10.1093/jamia/ocad022
View details for PubMedID 36826400
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End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study.
Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies
2022
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Abstract
OBJECTIVES: Most pediatric patients on ventricular assist device (VAD) survive to transplantation. Approximately 15% will die on VAD support, and the circumstances at the end-of-life are not well understood. We, therefore, sought to characterize patient location and invasive interventions used at the time of death.DESIGN: Retrospective database study of a cohort meeting inclusion criteria.SETTING: Thirty-six centers participating in the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry.PATIENTS: Children who died on VAD therapy in the period March 2012 to September 2021.INTERVENTIONS: None.MEASUREMENTS AND MAIN RESULTS: Of the 117 of 721 patients (16%) who died on VAD, the median (interquartile range) age was 5 years (1-16 yr) at 43 days (17-91 d) postimplant. Initial goals of therapy were bridge to consideration for candidacy for transplantation in 60 of 117 (51%), bridge to transplantation in 44 of 117 (38%), bridge to recovery 11 of 117 (9%), or destination therapy (i.e., VAD as the endpoint) in two of 117 (2%). The most common cause of death was multiple organ failure in 35 of 117 (30%), followed by infection in 12 of 117 (10%). Eighty-five of 92 (92%) died with a functioning device in place. Most patients were receiving invasive interventions (mechanical ventilation, vasoactive infusions, etc.) at the end of life. Twelve patients (10%) died at home.CONCLUSIONS: One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.
View details for DOI 10.1097/PCC.0000000000003115
View details for PubMedID 36398973
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Sharing Decisions When Withdrawing a Technology Is Not the Same as Withholding It.
The American journal of bioethics : AJOB
2022; 22 (11): 69-72
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View details for DOI 10.1080/15265161.2022.2123976
View details for PubMedID 36332051
Publications
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Not in my AI: Moral engagement and disengagement in health care AI development.
Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing
2023; 28: 496-506
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Abstract
Machine learning predictive analytics (MLPA) are utilized increasingly in health care, but can pose harms to patients, clinicians, health systems, and the public. The dynamic nature of this technology creates unique challenges to evaluating safety and efficacy and minimizing harms. In response, regulators have proposed an approach that would shift more responsibility to MLPA developers for mitigating potential harms. To be effective, this approach requires MLPA developers to recognize, accept, and act on responsibility for mitigating harms. In interviews of 40 MLPA developers of health care applications in the United States, we found that a subset of ML developers made statements reflecting moral disengagement, representing several different potential rationales that could create distance between personal accountability and harms. However, we also found a different subset of ML developers who expressed recognition of their role in creating potential hazards, the moral weight of their design decisions, and a sense of responsibility for mitigating harms. We also found evidence of moral conflict and uncertainty about responsibility for averting harms as an individual developer working in a company. These findings suggest possible facilitators and barriers to the development of ethical ML that could act through encouragement of moral engagement or discouragement of moral disengagement. Regulatory approaches that depend on the ability of ML developers to recognize, accept, and act on responsibility for mitigating harms might have limited success without education and guidance for ML developers about the extent of their responsibilities and how to implement them.
View details for PubMedID 36541003
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Re-envisioning community genetics: community empowerment in preventive genomics.
Journal of community genetics
2023
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Abstract
As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many healthcare systems to support person-centered and value-based care. This paper argues that any conversation about whether and how to design and implement PGS clinical services requires dynamic engagement with local communities, patients, and families. These parties often face the consequences, both positive and negative, of such uncertainties and should therefore drive clinical translation. As a collaborative effort between hospital stakeholders, community partners, and researchers, this paper describes a community-empowered co-design process for addressing uncertainty and making programmatic decisions about the implementation of PGS into clinical services. We provide a framework for others interested in designing clinical programs that are responsive to, and inclusive and respectful of, local communities.
View details for DOI 10.1007/s12687-023-00638-y
View details for PubMedID 36765027
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Trustworthiness matters: Building equitable and ethical science.
Cell
2023
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Abstract
Trustworthy science requires research practices that center issues of ethics, equity, and inclusion. We announce the Leadership in the Equitable and Ethical Design (LEED) of Science, Technology, Mathematics, and Medicine (STEM) initiative to create best practices for integrating ethical expertise and fostering equitable collaboration.
View details for DOI 10.1016/j.cell.2023.01.008
View details for PubMedID 36724788
Publications
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Not in my AI: Moral engagement and disengagement in health care AI development.
Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing
2023; 28: 496-506
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Abstract
Machine learning predictive analytics (MLPA) are utilized increasingly in health care, but can pose harms to patients, clinicians, health systems, and the public. The dynamic nature of this technology creates unique challenges to evaluating safety and efficacy and minimizing harms. In response, regulators have proposed an approach that would shift more responsibility to MLPA developers for mitigating potential harms. To be effective, this approach requires MLPA developers to recognize, accept, and act on responsibility for mitigating harms. In interviews of 40 MLPA developers of health care applications in the United States, we found that a subset of ML developers made statements reflecting moral disengagement, representing several different potential rationales that could create distance between personal accountability and harms. However, we also found a different subset of ML developers who expressed recognition of their role in creating potential hazards, the moral weight of their design decisions, and a sense of responsibility for mitigating harms. We also found evidence of moral conflict and uncertainty about responsibility for averting harms as an individual developer working in a company. These findings suggest possible facilitators and barriers to the development of ethical ML that could act through encouragement of moral engagement or discouragement of moral disengagement. Regulatory approaches that depend on the ability of ML developers to recognize, accept, and act on responsibility for mitigating harms might have limited success without education and guidance for ML developers about the extent of their responsibilities and how to implement them.
View details for PubMedID 36541003
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Ethical and epistemic issues in the design and conduct of pragmatic stepped-wedge cluster randomized clinical trials.
Contemporary clinical trials
2022: 106703
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Abstract
Stepped-wedge cluster randomized trial (SW-CRT) designs are increasingly employed in pragmatic research; they differ from traditional parallel cluster randomized trials in which an intervention is delivered to a subset of clusters, but not to all. In a SW-CRT, all clusters receive the intervention under investigation by the end of the study. This approach is thought to avoid ethical concerns about the denial of a desired intervention to participants in control groups. Such concerns have been cited in the literature as a primary motivation for choosing SW-CRT design, however SW-CRTs raise additional ethical concerns related to the delayed implementation of an intervention and consent. Yet, PCT investigators may choose SW-CRT designs simply because they are concerned that other study designs are infeasible. In this paper, we examine justifications for the use of SW-CRT study design, over other designs, by drawing on the experience of the National Institutes of Health's Health Care Systems Research Collaboratory (NIH Collaboratory) with five pragmatic SW-CRTs. We found that decisions to use SW-CRT design were justified by practical and epistemic reasons rather than ethical ones. These include concerns about feasibility, the heterogeneity of cluster characteristics, and the desire for simultaneous clinical evaluation and implementation. In this paper we compare the potential benefits of SW-CRTs against the ethical and epistemic challenges brought forth by the design and suggest that the choice of SW-CRT design must balance epistemic, feasibility and ethical justifications. Moreover, given their complexity, such studies need rigorous and informed ethical oversight.
View details for DOI 10.1016/j.cct.2022.106703
View details for PubMedID 35176501
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Reducing barriers to ethics in neuroscience
FRONTIERS IN HUMAN NEUROSCIENCE
2010; 4
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Abstract
Ethics is a growing interest for neuroscientists, but rather than signifying a commitment to the protection of human subjects, care of animals, and public understanding to which the professional community is engaged in a fundamental way, interest has been consumed by administrative overhead and the mission creep of institutional ethics reviews. Faculty, trainees, and staff (n = 605) in North America whose work involves brain imaging and brain stimulation completed an online survey about ethics in their research. Using factor analysis and linear regression, we found significant effects for invasiveness of imaging technique, professional position, gender, and local presence of bioethics centers. We propose strategies for improving communication between the neuroscience community and ethics review boards, collaborations between neuroscientists and biomedical ethicists, and ethics training in graduate neuroscience programs to revitalize mutual goals and interests.
View details for DOI 10.3389/fnhum.2010.00167
View details for Web of Science ID 000289308000001
View details for PubMedID 20953291
View details for PubMedCentralID PMC2955400
Publications
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Neuroscience and the Criminal Justice System
ANNUAL REVIEW OF CRIMINOLOGY, VOL 2
2019; 2: 451–71
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View details for DOI 10.1146/annurev-criminol-011518-024433
View details for Web of Science ID 000456392800020
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Neuroethics Guiding Principles for the NIH BRAIN Initiative.
The Journal of neuroscience : the official journal of the Society for Neuroscience
2018; 38 (50): 10586–88
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View details for DOI 10.1523/JNEUROSCI.2077-18.2018
View details for PubMedID 30541767
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The ethics of experimenting with human brain tissue.
Nature
2018; 556 (7702): 429–32
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View details for DOI 10.1038/d41586-018-04813-x
View details for PubMedID 29691509
Publications
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Not in my AI: Moral engagement and disengagement in health care AI development.
Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing
2023; 28: 496-506
More
Abstract
Machine learning predictive analytics (MLPA) are utilized increasingly in health care, but can pose harms to patients, clinicians, health systems, and the public. The dynamic nature of this technology creates unique challenges to evaluating safety and efficacy and minimizing harms. In response, regulators have proposed an approach that would shift more responsibility to MLPA developers for mitigating potential harms. To be effective, this approach requires MLPA developers to recognize, accept, and act on responsibility for mitigating harms. In interviews of 40 MLPA developers of health care applications in the United States, we found that a subset of ML developers made statements reflecting moral disengagement, representing several different potential rationales that could create distance between personal accountability and harms. However, we also found a different subset of ML developers who expressed recognition of their role in creating potential hazards, the moral weight of their design decisions, and a sense of responsibility for mitigating harms. We also found evidence of moral conflict and uncertainty about responsibility for averting harms as an individual developer working in a company. These findings suggest possible facilitators and barriers to the development of ethical ML that could act through encouragement of moral engagement or discouragement of moral disengagement. Regulatory approaches that depend on the ability of ML developers to recognize, accept, and act on responsibility for mitigating harms might have limited success without education and guidance for ML developers about the extent of their responsibilities and how to implement them.
View details for PubMedID 36541003
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What is "Personal" About Personal Experience? A Call to Reflexivity for All.
The American journal of bioethics : AJOB
2023; 23 (1): 39-41
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View details for DOI 10.1080/15265161.2022.2146794
View details for PubMedID 36595008
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Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study.
Journal of medical Internet research
2022; 24 (12): e42084
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Abstract
Social media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media.Our study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement.We conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis.In total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality.Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.
View details for DOI 10.2196/42084
View details for PubMedID 36542454
Publications
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"No Escalation of Treatment" Designations: A Multi-Institutional Exploratory Qualitative Study.
Chest
2022
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Abstract
BACKGROUND: No Escalation of Treatment (NoET) designations are used in intensive care units internationally to limit treatment for critically ill patients. However, they are the subject of debate in the literature and have not been qualitatively studied.QUESTION: How do physicians understand and perceive NoET designations, especially with regards to their utility and associated challenges? What mechanisms do hospitals provide to facilitate the use of NoET designations?STUDY DESIGN AND METHODS: Qualitative study at seven United States hospitals, employing semi-structured interviews with thirty physicians and review of relevant institutional records (e.g., hospital policies, screenshots of ordering menus in the electronic health record).RESULTS: At all hospitals, participants reported the use of NoET designations, which were understood to mean that providers should withhold new or higher-intensity interventions ("escalations") but not withdraw ongoing interventions. Three hospitals provided a specific mechanism for designating a patient as NoET (e.g., a DNR/Do-Not-Escalate code status order); at the remaining hospitals, a variety of informal methods (e.g., verbal handoffs) were used. We identified five functions of NoET designations: (1) Defining an intermediate point of treatment limitation, (2) Helping physicians navigate pre-arrest clinical decompensations, (3) Helping surrogate decision makers transition toward comfort care, (4) Preventing patient harm from invasive measures, and (5) Conserving critical care resources. Across hospitals, participants reported implementation challenges related to the ambiguity in meaning of NoET designations.INTERPRETATION: Despite ongoing debate, NoET designations are used in a varied sample of hospitals and are perceived as having multiple functions, suggesting they may fulfill an important need in the care of critically ill patients, especially at the end of life. The use of NoET designations can be improved through the implementation of a formal mechanism that encourages consistency across providers and clarifies the meaning of "escalation" for each patient.
View details for DOI 10.1016/j.chest.2022.08.2211
View details for PubMedID 36007596
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Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.
Journal of palliative medicine
2021
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Abstract
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.
View details for DOI 10.1089/jpm.2021.0521
View details for PubMedID 34807737
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"Relax City Homecare team; protocols are ready for you" - A Quality Improvement Project Conducted on Behalf of the City Homecare Unit Team at the Trivandrum Institute of Palliative Sciences.
Indian journal of palliative care
2021; 27 (2): 204-210
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Abstract
The city homecare unit (CHU) of the Trivandrum Institute of Palliative Sciences was dissatisfied with the quality of care provided to their patient population.This study aims to improve the average satisfaction score of CHU during their daily homecare services.The improvement project for the CHU activities was conducted with a prospective plan-do-study-act design, with stepwise application of improvement tools.The A3 quality improvement (QI) methodology, which uses tools for (i) analysing contributors (process mapping, cause-effect diagram); (ii) to derive key drivers (Pareto chart) and (iii) for measuring impact of interventions and sustainability (annotated run chart) was applied. The project was conducted as a mentored activity of the PC-PAICE program. The team's weekly average satisfaction score was recorded prospectively as the outcome parameter, with 0 representing total dissatisfaction and 10 representing total satisfaction. Accuracy of triaging and appropriateness of registration process were the process parameters selected. These were recorded as run charts across the project period of 9 months.The cause-effect tool and the impact effort tool were used to analyse the mapped CHU processes. Even though we identified 22 contributors to the problem, eight of them were found to be significant. Key drivers were determined based on these eight and applied to the CHU processes. Over the project period, the satisfaction scores of the CHU improved significantly from 5.82 to 7.6 that is, satisfaction levels were high on most days. The triaging and registration goals were achieved. The team also built its own capacity for QI.The application of the A3 methodology simplified and streamlined efforts and achieved the quality goal for the CHU team.
View details for DOI 10.25259/IJPC_408_20
View details for PubMedID 34511785
View details for PubMedCentralID PMC8428877
Publications
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Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health
HASTINGS CENTER REPORT
2020; 50: S54–S61
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Abstract
The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this context, the good biocitizen is expected to assume personal responsibility for health through consumption of genomic information and acquiescence to public and private efforts at data surveillance and aggregation. These shifts raise fundamental questions about how competing interests of the public, the state, and corporate entities will be reconciled and what trade-offs are demanded for the promise of precision health.
View details for DOI 10.1002/hast.1156
View details for Web of Science ID 000543918300008
View details for PubMedID 32597530
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Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.
The American journal of bioethics : AJOB
2020: 1–15
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Abstract
Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improve human health. Drawing on anthropological framings of the "gift," this paper contextualizes participation in precision medicine as inextricable from social relationships and their ongoing ethical obligations. Going beyond altruism, reframing biospecimen and data collection in terms of socially regulated gift-giving recovers questions of responsibility and care. As opposed to conceiving participation in terms of donations that elide clinical labor critical to precision medicine, the gift metaphor underscores ethical commitments to reciprocity and responsibility. This demands confronting inequities in precision medicine, such as systemic bias and lack of affordability and access. A focus on justice in precision medicine that recognizes the sociality of the gift is a critical frontier for bioethics.
View details for DOI 10.1080/15265161.2020.1851813
View details for PubMedID 33325811
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Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution.
Genetics in medicine : official journal of the American College of Medical Genetics
2020
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Abstract
This study describes challenges faced while incorporating sometimes conflicting stakeholder feedback into study design and development of patient-facing materials for a translational genomics study aiming to reduce health disparities among diverse populations.We conducted an ethnographic analysis of study documents including summaries of patient advisory committee meetings and interviews, reflective field notes written by study team members, and correspondence with our institutional review board (IRB). Through this analysis, we identified cross-cutting challenges for incorporating stakeholder feedback into development of our recruitment, risk assessment, and informed consent processes and materials.Our analysis revealed three key challenges: (1) balancing precision and simplicity in the design of study materials, (2) providing clinical care within the research context, and (3) emphasizing potential study benefits versus risks and limitations.While involving patient stakeholders in study design and materials development can increase inclusivity and responsiveness to patient needs, patient feedback may conflict with that of content area experts on the research team and IRBs who are tasked with overseeing the research. Our analysis highlights the need for further empirical research about ethical challenges when incorporating patient feedback into study design, and for dialogue with genomic researchers and IRB representatives about these issues.
View details for DOI 10.1038/s41436-020-0763-z
View details for PubMedID 32089547
Publications
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Revise the UDDA to Align the Law with Practice through Neuro-Respiratory Criteria.
Neurology
1800
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Abstract
Although the Uniform Determination of Death Act (UDDA) has served as a model statute for 40 years, there is a growing recognition that the law must be updated. One issue being considered by the Uniform Law Commission's Drafting Committee to revise the UDDA is whether the text "all functions of the entire brain, including the brainstem" should be changed. Some argue that the absence of diabetes insipidus indicates that some brain functioning continues in many individuals who otherwise meet the "accepted medical standards" like the American Academy of Neurology's. The concern is that the legal criteria and the medical standards used to determine death by neurological criteria are not aligned. We argue for the revision of the UDDA to more accurately specify legal criteria which align with the medical standards: brain injury leading to permanent loss of a) the capacity for consciousness, b) the ability to breathe spontaneously, and c) brainstem reflexes. We term these criteria "neuro-respiratory criteria" and show that they are well-supported in the literature for physiological and social reasons justifying their use in the law.
View details for DOI 10.1212/WNL.0000000000200024
View details for PubMedID 35078943
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Variation in the design of Do Not Resuscitate orders and other code status options: a multi-institutional qualitative study.
BMJ quality & safety
2020
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Abstract
BACKGROUND: US hospitals typically provide a set of code status options that includes Full Code and Do Not Resuscitate (DNR) but often includes additional options. Although US hospitals differ in the design of code status options, this variation and its impacts have not been empirically studied.DESIGN AND METHODS: Multi-institutional qualitative study at 7 US hospitals selected for variability in geographical location, type of institution and design of code status options. We triangulated across three data sources (policy documents, code status ordering menus and in-depth physician interviews) to characterise the code status options available at each hospital. Using inductive qualitative methods, we investigated design differences in hospital code status options and the perceived impacts of these differences.RESULTS: The code status options at each hospital varied widely with regard to the number of code status options, the names and definitions of code status options, and the formatting and capabilities of code status ordering menus. DNR orders were named and defined differently at each hospital studied. We identified five key design characteristics that impact the function of a code status order. Each hospital's code status options were unique with respect to these characteristics, indicating that code status plays differing roles in each hospital. Physician participants perceived that the design of code status options shapes communication and decision-making practices about resuscitation and life-sustaining treatments, especially at the end of life. We identified four potential mechanisms through which this may occur: framing conversations, prompting decisions, shaping inferences and creating categories.CONCLUSIONS: There are substantive differences in the design of hospital code status options that may contribute to known variability in end-of-life care and treatment intensity among US hospitals. Our framework can be used to design hospital code status options or evaluate their function.
View details for DOI 10.1136/bmjqs-2020-011222
View details for PubMedID 33082165
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"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research.
Genetics in medicine : official journal of the American College of Medical Genetics
2018
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Abstract
PURPOSE: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections.METHODS: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research.RESULTS: Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data.CONCLUSION: Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.
View details for PubMedID 29887604
Publications
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Psychosocial assessment of transplant candidates: Inter-rater reliability and concurrent validity of the Japanese version of the Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT).
Journal of the Academy of Consultation-Liaison Psychiatry
2021
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Abstract
BACKGROUND: The Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT) is a comprehensive instrument developed to provide a standardized, objective, and evidence-based psychosocial evaluation of the main pre-transplant psychosocial risk factors that may influence transplant outcomes.OBJECTIVE: Since established assessment procedures or standardized tools designed to perform pre-solid organ transplant psychosocial evaluation are currently unavailable in Japan, the present study aimed to develop and preliminarily validate the Japanese version of the SIPAT.METHODS: First, the Japanese version of the SIPAT was developed using standard forward-back-translation procedures. Then, the Japanese versions of the SIPAT and the Japanese version of Psychosocial Assessment of Candidates for Transplant (PACT) were retrospectively and blindly applied to 107 transplant cases by 4 independent raters.RESULTS: The interrater reliability of the scores obtained with the Japanese version of the SIPAT was excellent (Pearson's correlation coefficient = 0.86). The concurrent validity of the SIPAT to the PACT for each examiner was substantial (Spearman's rank correlation coefficient = -0.66).CONCLUSION: These findings suggest that the Japanese version of the SIPAT is a promising and reliable instrument. Further research is required to test the predictive validity of the Japanese version of the SIPAT.
View details for DOI 10.1016/j.jaclp.2021.10.004
View details for PubMedID 34863909
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Research Needs for Inpatient Management of Severe Alcohol Withdrawal Syndrome An Official American Thoracic Society Research Statement
AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE
2021; 204 (7): E61-E87
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Abstract
Background: Severe alcohol withdrawal syndrome (SAWS) is highly morbid, costly, and common among hospitalized patients, yet minimal evidence exists to guide inpatient management. Research needs in this field are broad, spanning the translational science spectrum. Goals: This research statement aims to describe what is known about SAWS, identify knowledge gaps, and offer recommendations for research in each domain of the Institute of Medicine T0-T4 continuum to advance the care of hospitalized patients who experience SAWS. Methods: Clinicians and researchers with unique and complementary expertise in basic, clinical, and implementation research related to unhealthy alcohol consumption and alcohol withdrawal were invited to participate in a workshop at the American Thoracic Society 2019 International Conference. The committee was subdivided into four groups on the basis of interest and expertise: T0-T1 (basic science research with translation to humans), T2 (research translating to patients), T3 (research translating to clinical practice), and T4 (research translating to communities). A medical librarian conducted a pragmatic literature search to facilitate this work, and committee members reviewed and supplemented the resulting evidence, identifying key knowledge gaps. Results: The committee identified several investigative opportunities to advance the care of patients with SAWS in each domain of the translational science spectrum. Major themes included 1) the need to investigate non-γ-aminobutyric acid pathways for alcohol withdrawal syndrome treatment; 2) harnessing retrospective and electronic health record data to identify risk factors and create objective severity scoring systems, particularly for acutely ill patients with SAWS; 3) the need for more robust comparative-effectiveness data to identify optimal SAWS treatment strategies; and 4) recommendations to accelerate implementation of effective treatments into practice. Conclusions: The dearth of evidence supporting management decisions for hospitalized patients with SAWS, many of whom require critical care, represents both a call to action and an opportunity for the American Thoracic Society and larger scientific communities to improve care for a vulnerable patient population. This report highlights basic, clinical, and implementation research that diverse experts agree will have the greatest impact on improving care for hospitalized patients with SAWS.
View details for DOI 10.1164/rccm.202108-1845ST
View details for Web of Science ID 000705466800002
View details for PubMedID 34609257
View details for PubMedCentralID PMC8528516
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The Use of Physostigmine in the Diagnosis and Treatment of Anticholinergic Toxicity After Olanzapine Overdose: Literature Review and Case Report
JOURNAL OF THE ACADEMY OF CONSULTATION-LIAISON PSYCHIATRY
2021; 62 (4): 285-297
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View details for Web of Science ID 000671776700003
Publications
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Dimensions of Research-Participant Interaction: Engagement is Not a Replacement for Consent.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
2020; 48 (1): 183–84
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View details for DOI 10.1177/1073110520917008
View details for PubMedID 32342787
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What Are Important Ethical Implications of Using Facial Recognition Technology in Health Care?
AMA journal of ethics
2019; 21 (2): E180–187
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Abstract
Applications of facial recognition technology (FRT) in health care settings have been developed to identify and monitor patients as well as to diagnose genetic, medical, and behavioral conditions. The use of FRT in health care suggests the importance of informed consent, data input and analysis quality, effective communication about incidental findings, and potential influence on patient-clinician relationships. Privacy and data protection are thought to present challenges for the use of FRT for health applications.
View details for DOI 10.1001/amajethics.2019.180
View details for PubMedID 30794128
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Data mining for health: staking out the ethical territory of digital phenotyping
NPJ DIGITAL MEDICINE
2018; 1
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View details for DOI 10.1038/s41746-018-0075-8
View details for Web of Science ID 000453910600001
Publications
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Genes do not operate in a vacuum, and neither should our research
NATURE GENETICS
2021; 53 (3): 255–56
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View details for DOI 10.1038/s41588-021-00802-5
View details for Web of Science ID 000626724200001
View details for PubMedID 33686261
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"The train has left the station": The arrival of the biosocial sciences in education
RESEARCH IN EDUCATION
2020; 107 (1): 3–9
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View details for DOI 10.1177/0034523720914636
View details for Web of Science ID 000523117700001
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DNA Dreams': Teacher Perspectives on the Role and Relevance of Genetics for Education
RESEARCH IN EDUCATION
2020; 107 (1): 33–54
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View details for DOI 10.1177/0034523719869956
View details for Web of Science ID 000482706500001
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Advertising, patient decision making, and self-referral for computed tomographic and magnetic resonance imaging
ARCHIVES OF INTERNAL MEDICINE
2004; 164 (22): 2415-2419
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Abstract
Self-referred imaging is one of the latest health care services to be marketed directly to consumers. Most aspects of these services are unregulated, and little is known about the messages in advertising used to attract potential consumers. We conducted a detailed analysis of print advertisements and informational brochures for self-referred imaging with respect to themes, content, accuracy, and emotional valence.Forty print advertisements from US newspapers around the country and 20 informational brochures were analyzed by 2 independent raters according to 7 major themes: health care technology; emotion, empowerment, and assurance; incentives; limited supporting evidence; popular appeal; statistics; and images. The Fisher exact test was used to identify significant differences in information content.Both the advertisements and the brochures emphasized health care and technology information and provided assurances of good health and incentives to self-refer. These materials also encouraged consumers to seek further information from company resources; virtually none referred to noncomplying sources of information or to the risks of having a scan. Images of people commonly portrayed European Americans. We found statistical differences between newspaper advertisements and mailed brochures for references to "prevalence of disease" (P<.001), "death" (P<.003), and "radiation" (P<.001). Statements lacking clear scientific evidence were identified in 38% of the advertisements (n = 15) and 25% of the brochures (n = 5).Direct-to-consumer marketing of self-referred imaging services, in both print advertisements and informational brochures, fails to provide prospective consumers with comprehensive balanced information vital to informed autonomous decision making. Professional guidelines and oversight for advertising and promotion of these services are needed.
View details for Web of Science ID 000225701900003
View details for PubMedID 15596630
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Discovery and disclosure of incidental findings in neuroimaging research
33rd Annual Meeting of the Society-for-Neuroscience
JOHN WILEY & SONS INC. 2004: 743–47
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Abstract
To examine different protocols for handling incidental findings on brain research MRIs, and provide a platform for establishing formal discussions of related ethical and policy issues.Corresponding authors identified from a database of peer-reviewed publications in 1991-2002 involving functional MRI (fMRI), alone or in combination with other imaging modalities, were invited to participate in this web-based survey. The survey asked questions regarding knowledge and handling of incidental findings, as well as characteristics of the scanning environment, training required, IRB protocol requirements, and neuroradiologist involvement.Seventy-four investigators who conduct MRI studies in the United States and abroad responded. Eighty-two percent (54/66) reported discovering incidental findings in their studies, such as arteriovenous malformations, brain tumors, and developmental abnormalities. Substantial variability was found in the procedures for handling and communicating findings to subjects, neuroradiologist involvement, personnel permitted to operate equipment, and training.Guidelines for minimum and optimum standards for detecting and communicating incidental findings on brain MRI research are needed.
View details for DOI 10.1002/jmri.20180
View details for Web of Science ID 000224762700001
View details for PubMedID 15503329
View details for PubMedCentralID PMC1506385
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Chylothorax after heart/lung transplantation
JOURNAL OF HEART AND LUNG TRANSPLANTATION
2004; 23 (5): 627-631
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Abstract
Chylothorax is a potentially serious complication of lung and heart-lung transplantation. This article describes the clinical course of chylothorax in 3 heart-lung allograft recipients. We discuss management options, including dietary modifications, octreotide infusion, thoracic duct ligation and embolization, and surgical pleurodesis. In addition, we describe the novel use of aminocaproic acid to reduce lymph flow. We propose a multidisciplinary approach for the management of chylothorax that includes both medical and surgical options.
View details for Web of Science ID 000221393700018
View details for PubMedID 15135382
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Automating Justice: An Ethical Responsibility of Computational Bioethics.
The American journal of bioethics : AJOB
2022; 22 (7): 30-33
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View details for DOI 10.1080/15265161.2022.2075051
View details for PubMedID 35737496
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Regulatory Angels and Technology Demons? Making Sense of Evolving Realities in Health Data Privacy for the Digital Age.
The American journal of bioethics : AJOB
2022; 22 (7): 68-70
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View details for DOI 10.1080/15265161.2022.2075981
View details for PubMedID 35737504
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Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.
Biopreservation and biobanking
2022
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Abstract
Studies on the ethics of automating clinical or research decision making using artificial intelligence and other algorithmic tools abound. Less attention has been paid, however, to the scope for, and ethics of, automating decision making within regulatory apparatuses governing the access, use, and exchange of data involving humans for research. In this article, we map how the binary logic flows and real-time capabilities of automated decision support (ADS) systems may be leveraged to accelerate one rate-limiting step in scientific discovery: data access management. We contend that improved auditability, consistency, and efficiency of the data access request process using ADS systems have the potential to yield fairer outcomes in requests for data largely sourced from biospecimens and biobanked samples. This procedural justice rationale reinforces a broader set of participant and data subject rights that data access committees (DACs) indirectly protect. DACs protect the rights of citizens to benefit from science by bringing researchers closer to the data they need to advance that science. DACs also protect the informational dignities of individuals and communities by ensuring the data being accessed are used in ways consistent with participant values. We discuss the development of the Global Alliance for Genomics and Health Data Use Ontology standard as a test case of ADS for genomic data access management specifically, and we synthesize relevant ethical, legal, and social challenges to its implementation in practice. We conclude with an agenda of future research needed to thoughtfully advance strategies for computational governance that endeavor to instill public trust in, and maximize the scientific value of, health-related human data across data types, environments, and user communities.
View details for DOI 10.1089/bio.2022.0042
View details for PubMedID 35772014
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Advice to a Medical Student Contemplating Anesthesiology.
Anesthesia and analgesia
2023; 136 (3): 621
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View details for DOI 10.1213/ANE.0000000000006061
View details for PubMedID 36806237
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Being Sick With an Englishwoman.
Anesthesia and analgesia
2022; 135 (1): 217-218
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View details for DOI 10.1213/ANE.0000000000005947
View details for PubMedID 35709451
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Chromatic Scale.
JAMA
2022; 327 (23): 2359
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View details for DOI 10.1001/jama.2022.5383
View details for PubMedID 35727275
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"Like Not Having an Arm": Perspectives of Patients, Caregivers, and Practitioners on the Impact of Visitor Restrictions on Cancer Care During the COVID-19 Pandemic
ELSEVIER SCIENCE INC. 2022: 1085
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View details for Web of Science ID 000802790300092
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An Evidence-Informed Cancer Care Communication Tool to Support Patients, Family, and Cancer and Palliative Care Clinicians During the COVID-19 Pandemic
ELSEVIER SCIENCE INC. 2022: 1075
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View details for Web of Science ID 000802790300076
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A Tale of Two Pandemics: Cancer Coping and Care Delivery During the COVID-19 Pandemic
ELSEVIER SCIENCE INC. 2022: 1082-1083
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View details for Web of Science ID 000802790300089