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The View from the Benches: Scientists’ Perspectives on the Uses and Governance of Human Gene-Editing Research

August 26, 2021

The advent of human gene editing has stimulated international interest in how best to govern this research. However, research on stakeholder views has neglected scientists themselves. We surveyed 212 scientists who use gene editing in their work. Questions captured views on oversight and use of somatic and germline human gene editing for treatment, prevention, and … Read more

A New Governance Overnance Approach to Regulating Human Genome Editing

December 10, 2020

For years, genomic medicine—medicine based on the growing understanding of the genetic contribution to many diseases and conditions—has been hailed as the future of medical treatment, but it has thus far had limited effect on day-to-day medical practice. The ultimate goal of genomic medicine has always been the ability not just to identify dangerous gene … Read more

Recommendations from Thai Stakeholders About Protecting HIV Remission (‘cure’) Trial Participants: Report from a Participatory Workshop

November 1, 2020

Background The social/behavioral HIV Decision-Making Study (DMS) assesses informed consent and trial experiences of individuals in HIV remission trials in Thailand. We convened a 1-d multi-stakeholder participatory workshop in Bangkok. We provide a meeting summary and reactions from DMS investigators. Methods Workshop members viewed de-identified interview excerpts from DMS participants. They deliberated on the findings … Read more

Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials

June 25, 2020

Collaborations between clinical investigators and behavioral and social science researchers (BSSR) produce many benefits, but also may generate challenges and complexities. Ongoing relationships between teams may affect the research carried out by the BSSR team and the way they interpret their findings. Here we describe our experiences conducting the HIV Remission (‘Cure’) Trials Decision-Making Study … Read more

Incidental Enhancements: A Neglected Governance Challenge for Human Genome Editing Research

June 25, 2020

The increasing pace and international diffusion of developments in human genome editing research have prompted ongoing efforts to develop responsible governance for such research. One point of broad agreement across these efforts is that human genome editing research should prioritize medical applications over attempts to enhance human traits because of the moral concerns the latter … Read more

Professionalism and Ethics: A Standardized Patient Observed Standardized Clinical Examination to Assess ACGME Pediatric Professionalism Milestones

May 1, 2020

Introduction: The ethical skills fundamental to medical practice encompass a large portion of the Accreditation Council for Graduate Medical Education (ACGME) professionalism milestones. Yet many ethical practices are difficult to reduce to milestone frameworks given the variety of traditions of moral reasoning that clinician-trainees and their colleagues might properly employ. Methods: We developed an observed … Read more

Is Real-Time ELSI Realistic?

May 1, 2020

Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against … Read more

Assessing the Implications of Positive Genomic Screening Results

May 1, 2020

Aim: Before population screening of ‘healthy’ individuals is widely adopted, it is important to consider the harms and benefits of receiving positive results and how harms and benefits may differ by age. Subjects & methods: Participants in a preventive genomic screening study were screened for 17 genes associated with 11 conditions. We interviewed 11 participants … Read more

Exploring the Emotional Labor of Medical Trainees in the Setting of Ethics Education

November 2, 2019

Julie Childers and Bob Arnold’s (2019) article, “The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill,” uses Kübler-Ross’s influential work on death and dying to remind us that the experiences contained within her framework relate not only to patients but also to members of their care teams. Childers and Arnold’s … Read more

Perils of the Hidden Curriculum: Emotional Labor and “Bad” Pediatric Proxies

October 11, 2019

Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at … Read more