Developing a Community-Led Rare Disease ELSI Research Agenda

Developing a Community-Led Rare Disease ELSI Research Agenda

In this episode, Dr. Jeremy Garrett is joined by Courtney Berrios and Kimberly Freeman. They will be discussing the topic of pediatric rare diseases and the development of a community-led research agenda for better understanding the needs and priorities of patients and families living with rare diseases.


Click here to read Dr. Garrett's article focusing on Developing a community-led rare disease ELSI research agenda

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Episoder(46)

Parental Perspectives on Values and Values Conflicts in the NICU

Parental Perspectives on Values and Values Conflicts in the NICU

Aligning parental values with medical facts is the focus of goal-oriented shared decision-making in the NICU. How to effectively engage in this process is up for debate. Ian Wolfe, editor-in-chief of ...

24 Jan 20250s

A Narrative Approach to Assent in Pediatrics

A Narrative Approach to Assent in Pediatrics

Ian Wolfe, PhD, MA, RN, HEC-C hosts Tyler Clay, MD and discusses his recent publication "A Narrative Approach to Assent in Pediatrics" in the Journal of Pediatric Ethics.

24 Jan 20250s

Equity, inclusion and cultural humility: contemporizing the neonatal intensive care unit family-centered care model

Equity, inclusion and cultural humility: contemporizing the neonatal intensive care unit family-centered care model

In this episode, Dr. Beatriuce Lechner will lead a discussion about her project from the course, which was recently published in the Journal of Perinatology, entitled Equity, Inclusion, and Cultural H...

10 Jul 20240s

Bridging Complex Clinician-Patient Dynamics Arising in Neonatal ICU Care in Ethiopia

Bridging Complex Clinician-Patient Dynamics Arising in Neonatal ICU Care in Ethiopia

In this episode, Redeat Workneh leads a discussion focusing on navigating barriers between clinicians and patients in Ethiopia.

21 Mai 20240s

Medical Improv and its Potential in Teaching Skills Related to Bioethics

Medical Improv and its Potential in Teaching Skills Related to Bioethics

In this episode, Dr. Tanya Arora leads a discussion focusing on medical improv.

17 Apr 20240s

Ethics in Ethiopia: Navigating Challenges in Pediatric Clinical Care

Ethics in Ethiopia: Navigating Challenges in Pediatric Clinical Care

In this episode, Dr. Betty Kassa, who will lead a discussion focusing on international medical care, and what being a practicing pediatric intensivist is like in Ethiopia.

4 Des 20230s

Disagreement and Ethical Decision Making in Pediatric Emergency Care

Disagreement and Ethical Decision Making in Pediatric Emergency Care

In this episode, Dr. Ian Wolfe, editor-in-chief of the Journal of Pediatric Ethics, moderates a discussion with Drs. Joseph Shapiro and Jeremy Garrett breaking down their recent article on decision-ma...

15 Nov 20230s

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