Developing a community-led rare disease ELSI research agenda.

Background: Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.

Methods: This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease.

Whole Blood Thiamine in Organ Donors After the Neurologic Determination of Death.

Introduction: Metabolic resuscitation of organ donors and the attenuation of oxidative stress incurred by organs following brain death and transplantation have the potential to improve organ yield and allograft function. Thiamine (vitamin B1) is a vital coenzyme in both energy metabolism and the production of antioxidants that has not been studied in the donor population.

Research Aim: To determine the frequency of subclinical thiamine deficiency in brain-dead organ donors and its correlation with demographics, length of hospitalization, donor management, lactic acidosis, and the requirement for vasoactive support.

Our Next Pandemic Ethics Challenge? Allocating "Normal" Health Care Services.

The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected attempts to address them.

Legal and Ethical Considerations for Requiring Consent for Apnea Testing in Brain Death Determination.

The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria (DNC). The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter.

Disclosure of Misattributed Paternity.

One of the most common dilemmas faced by physicians and genetic counselors is the discovery of misattributed paternity. In this article, we present a case in which misattributed paternity was discovered as an incidental finding. Experts analyze the competing moral obligations that might dictate disclosure or nondisclosure.

Rethinking the "open future" argument against predictive genetic testing of children.

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future.

The Strange Tale of Three Identical Strangers: Cinematic Lessons in Bioethics.

Tim Wardle's 2018 documentary film Three Identical Strangers is an exploration of identity, family, and loss. It's also about nature versus nurture and the boundaries of ethically permissible research, particularly research involving children. The film tells the story of identical triplets who were separated soon after birth in 1961.

Do Sociocultural Factors Influence Periviability Counseling and Treatment More Than Science? Lessons From Scandinavia.

All of us (doctors, parents, bioethicists, and health policy makers) think differently about premature infants who require neonatal intensive care than we do about other patients who are critically ill. In most other clinical circumstances, those that involve patients other than premature infants, our first impulse when confronted with a patient in an emergency is to do whatever we can to rescue the patient. We offer life-sustaining treatments first and ask questions later.

When Residents Let Conscience Be Their Guide: Professional Development and Educational Opportunity.

Residency is a time of professional identity formation. During this time, residents may first be exposed to conflicts between professional duties and personal beliefs which may lead to a request for a conscience-based exemption. Faculty, whether the supervising attending or the program director, have an important role in the professional and ethical development of residents by acknowledging and supporting residents as they encounter these potential conflicts.

Why Are There So Few Ethics Consults in Children's Hospitals?

In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas.

Ethical issues in pediatric face transplantation.

Facial transplantation has become a reality in adult medicine. Children are subject to congenital craniofacial differences, disease-related, traumatic, or thermochemical craniofacial changes and might be suitable for face transplantation. This manuscript addresses unique ethical issues in considering potential pediatric face transplant.

Improving Comprehensive Medication Review Acceptance by Using a Standardized Recruitment Script: A Randomized Control Trial.

Background: The Centers for Medicare & Medicaid Services (CMS) require prescription drug plan sponsors to offer a comprehensive medication review (CMR) annually to eligible beneficiaries through the plans' Medication Therapy Management Programs (MTMPs). In 2011, the Pharmacy Quality Alliance endorsed the CMR completion rate as a quality measure for MTMPs, and CMS has adopted the measure into the 2016 CMS star ratings. CMS star ratings are used to describe the quality of plans to assist Medicare plan enrollees in choosing a plan and to determine quality bonus payments for Medicare Advantage plans.