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11Moral Engagement and Disengagement in Health Care AI DevelopmentAJOB Empirical Bioethics. forthcoming.Background Machine learning (ML) is utilized increasingly in health care, and can pose harms to patients, clinicians, health systems, and the public. In response, regulators have proposed an approach that would shift more responsibility to ML developers for mitigating potential harms. To be effective, this approach requires ML developers to recognize, accept, and act on responsibility for mitigating harms. However, little is known regarding the perspectives of developers themselves regarding the…Read more
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17The ELSI Virtual Forum, 30 Years of the Genome: Integrating and Applying ELSI ResearchJournal of Law, Medicine and Ethics 51 (3): 661-671. 2023.This paper reports our analysis of the ELSI Virtual Forum: 30 Years of the Genome: Integrating and Applying ELSI Research, an online meeting of scholars focused on the ethical, legal, and social implications (ELSI) of genetics and genomics.
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Developing a new paradigm for integrating ethics and biomedical research: proposal for a benchside consultation programAmerican Society for Bioethics and Humanities/Canadian Bioethics Society Joint Meeting. forthcoming.
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13Innovating for a Just and Equitable Future in Genomic and Precision Medicine ResearchAmerican Journal of Bioethics 23 (7): 1-4. 2023.From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...
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40Focusing on Cause or Cure? Priorities and Stakeholder Presence in Childhood Psychiatry ResearchAJOB Empirical Bioethics 5 (1): 44-55. 2014.
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14A Pilot Survey on the Licensing of DNA InventionsJournal of Law, Medicine and Ethics 31 (3): 442-449. 2003.Intellectual property in biotechnology invention provides important incentives for research and development leading to advances in genetic tests and treatments. However, there have been numerous concerns raised regarding the negative effect patents on gene sequences and their practical applications may have on clinical research and the availability of new medical tests and procedures. One concern is that licensing policies attempting to capture for the benefit of the licensor valuable rights to …Read more
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37Response to open Peer commentaries on "thinking about the human neuron mouse"American Journal of Bioethics 7 (5). 2007.This Article does not have an abstract
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24Racial and Ethnic Categories in Biomedical Research: There is No Baby in the BathwaterJournal of Law, Medicine and Ethics 34 (3): 497-499. 2006.There are deep divides over the use of racial and ethnic categories in biomedical research and its application in both medical and non-medical contexts. On one side of a roughly described dividing line are practitioners who need to use every piece of information at their disposal to solve pressing, realworld problems in real time, such as making clinical diagnoses or identifying perpetrators of crime. On the other side are scientists and policy makers committed to meeting a scientific and social…Read more
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5Are clinical trials of cell transplantation for Duchenne muscular dystrophy ethical?IRB: Ethics & Human Research 16 (1-2): 12-15. 1993.
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55Response to Open Peer Commentaries on “Strangers at the Beachside: Research Ethics Consultation”American Journal of Bioethics 8 (3): 4-6. 2008.Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for co…Read more
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34Research ethics: The “how” and “whys” of research: life scientists’ views of accountabilityJournal of Medical Ethics 35 (12): 762-767. 2009.Objectives: To investigate life scientists’ views of accountability and the ethical and societal implications of research. Design: Qualitative focus group and one-on-one interviews. Participants: 45 Stanford University life scientists, including graduate students, postdoctoral fellows and faculty. Results: Two main themes were identified in participants’ discussions of accountability: the “how” of science and the “why” of science. The “how” encompassed the internal conduct of research including …Read more
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18Resource Allocation in COVID-19 Research: Which Trials? Which Patients?American Journal of Bioethics 20 (7): 86-88. 2020.Volume 20, Issue 7, July 2020, Page 86-88.
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29“What Is the FDA Going to Think?”: Negotiating Values through Reflective and Strategic Category Work in Microbiome ScienceScience, Technology, and Human Values 40 (1): 71-95. 2015.The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with…Read more
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10To Understand Inequity, Bioethics Needs to Sort Things OutHastings Center Report 53 (2): 2-2. 2023.Bioethics is reexamining how to implement diversity, equity, inclusion, and justice concerns into scholarship. However, bioethicists should question the categories used to define diversity. The act of categorization is value laden, and classification systems confer power and benefits and generate harms. For example, what conditions count as disabilities? We should consider the equity implications of offering only “male” and “female” options for self‐identification in health records. However, we …Read more
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18Epistemic Rights and Responsibilities of Digital Simulacra for BiomedicineAmerican Journal of Bioethics 23 (9): 43-54. 2022.Big data and artificial intelligence (“AI”) promise to transform virtually all aspects of biomedical research and health care (Matheny et al. 2019), through facilitation of drug development, diagno...
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13Bridging the AI Chasm: Can EBM Address Representation and Fairness in Clinical Machine Learning?American Journal of Bioethics 22 (5): 30-32. 2022.McCradden et al. propose to close the “AI chasm” between algorithms and clinically meaningful application using the norms of evidence-based medicine and clinical research, with the rat...
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40Digital Contact Tracing, Privacy, and Public HealthHastings Center Report 50 (3): 43-46. 2020.Digital contact tracing, in combination with widespread testing, has been a focal point for many plans to “reopen” economies while containing the spread of Covid‐19. Most digital contact tracing projects in the United States and Europe have prioritized privacy protections in the form of local storage of data on smartphones and the deidentification of information. However, in the prioritization of privacy in this narrow form, there is not sufficient attention given to weighing ethical trade‐offs …Read more
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24The Invisibility of Asian Americans in COVID-19 Data, Reporting, and ReliefAmerican Journal of Bioethics 21 (3): 100-102. 2021.Without proper recognition of the dual pandemics of COVID-19 and racism that Asian Americans and other racial minorities in the United States are facing, we cannot successfully address structural b...
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12Partial Entrustment in Pragmatic Clinical TrialsAmerican Journal of Bioethics 20 (1): 24-26. 2020.
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39Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond ConsentAmerican Journal of Bioethics 18 (5). 2018.
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90Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine ResearchAmerican Journal of Bioethics 18 (4): 3-20. 2018.With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several fa…Read more
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24Defining the Scope and Improving the Quality of Clinical Research Ethics Consultation: Response to Open Peer Commentaries About the National CollaborativeAmerican Journal of Bioethics 18 (2): 13-15. 2018.
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50The Emergence of Clinical Research Ethics Consultation: Insights From a National CollaborativeAmerican Journal of Bioethics 18 (1): 39-45. 2018.The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 ch…Read more
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38Adrift in the gray zone: IRB perspectives on research in the learning health systemAJOB Empirical Bioethics 7 (2): 125-134. 2016.
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12Fairness and Transparency in an Expanded Access Program: Allocation of the Only Treatment for SMA1American Journal of Bioethics 17 (10): 71-73. 2017.
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12Innocent Fun or “Microslavery”?Hastings Center Report 44 (6): 38-46. 2014.In 2011, Ingmar Riedel‐Kruse's bioengineering laboratory at Stanford University publicized an application that uses paramecia for what the researchers termed “biotic games.” These games make use of living organisms, computer programs, and lab equipment to implement games like Pong, Pac‐man, and soccer. Gamesand related activities are often considered nonserious or trivial, whereas life, biological systems, and science are treated very seriously in moral analysis and public perception. The manipu…Read more
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27Understanding Incidental Findings in the Context of Genetics and GenomicsJournal of Law, Medicine and Ethics 36 (2): 280-285. 2008.Human genetic and genomic research can yield information that may be of clinical relevance to the individuals who participate as subjects of the research. However, no consensus exists as yet on the responsibilities of researchers to disclose individual research results to participants in human subjects research. “Genetic and genomic research” on humans varies widely, including association studies, examination of allele frequencies, and studies of natural selection, human migration, and genetic v…Read more
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27The Role of Patient Perspectives in Clinical Research Ethics and Policy: Response to Open Peer Commentaries on “Patient Perspectives on the Learning Health System”American Journal of Bioethics 16 (2): 7-9. 2016.
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66Engineering Values Into Genetic Engineering: A Proposed Analytic Framework for Scientific Social ResponsibilityAmerican Journal of Bioethics 15 (12): 18-24. 2015.Recent experiments have been used to “edit” genomes of various plant, animal and other species, including humans, with unprecedented precision. Furthermore, editing the Cas9 endonuclease gene with a gene encoding the desired guide RNA into an organism, adjacent to an altered gene, could create a “gene drive” that could spread a trait through an entire population of organisms. These experiments represent advances along a spectrum of technological abilities that genetic engineers have been working…Read more
Areas of Specialization
Biomedical Ethics |
Areas of Interest
Biomedical Ethics |