Skip to main content

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....

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?...

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...

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...

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...

Public Health Genomics, Biobanking, and Ethics

April 12, 2019
As large-scale biobanks are developed for translational genomic research and health care quality improvement, they are also becoming attractive as sites for public health interventions, such as population-based preventive sequencing for actionable variants. With the rapid advance of next-generation sequencing, the feasibility of such population health interventions is also increasing....

Is Enhancement the Price of Prevention in Human Gene Editing?

November 26, 2018
New gene-editing tools challenge conventional policy proscriptions of research aimed at either human germline gene editing or human enhancement by potentially lowering technical barriers to both kinds of intervention. Some recent gene-editing reports have begun to take up the prospect of germline editing, but most experts are in broad agreement...

Age and Perceived Risks and Benefits of Preventive Genomic Screening

September 1, 2018
PurposeAs genome sequencing moves from research to clinical practice, sequencing technologies focused on “medically actionable” targets are being promoted for preventive screening despite the dearth of systematic evidence of risks and benefits and of criteria for selection of screening subjects. This study investigates researchers’ and research participants’ perceptions of these...

Returning Negative Results to Individuals in a Genomic Screening Program: Lessons Learned

June 8, 2018
In genomics, the return of negative screening results for rare, medically actionable conditions in large unselected populations with low prior risk of disease is novel and may involve important and nuanced concerns for communicating their meaning. Recruitment may result in self-selection because of participants’ personal or family history, changing the...

Ethics of Treatment Interruption in HIV Cure Research: Addressing the Conundrum of Risk/Benefit Assessment.

March 22, 2018
Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption (ATI), involve uncertain and potentially high risk, with minimal chance of clinical...