Research Ethics and Policy Series (REPS)
january 6, 2020
The ethics of genomics research involving indigenous populations in Africa
Supplemental readings and commentary:
- Reardon, J. The Postgenomic Condition.
- Yudell, M. et al. Taking race out of human genetics.
- Sirugo, G. et al. The missing diversity in human genetic studies.
Sarah Tishkoff, PhD
David and Lyn Silfen University Professor,
Departments of Genetics & Biology, Perelman School of Medicine
Commentary by Kellie Owens, PhD
Fellow, Medical Ethics & Health Policy, Perelman School of Medicine
UPenn Research Ethics and Policy Series (REPS): Sarah Tishkoff, PhD
DEcember 2, 2019
Defining and Advancing IRB Quality and Effectiveness
Do you think institutional review boards (IRBs) “work”? What does that mean and how would we know? It turns out that evaluating IRB quality and effectiveness beyond superficial measurements related to compliance and efficiency is remarkably challenging. Nonetheless, it is essential to determining whether the system’s overall benefits outweigh its burdens, as well as what adjustments might be in order. In this lecture, Holly Fernandez Lynch describes the problem and introduces several novel approaches currently being pursued by the Consortium to Advance Effective Research Ethics Oversight (AEREO).
Holly Fernandez Lynch, JD, MBe
John Russell Dickson, MD Presidential Assistant
Professor of Medical Ethics, Medical Ethics & Health Policy, Perelman School of Medicine
UPenn Research Ethics and Policy Series (REPS): Holly Fernandez Lynch, JD, MBe
October 7, 2019
Gene editing and geopolitics
The controversy about the gene edited babies in China happens to have coincided with increasing tensions between the US and China and intensified competition in the life sciences, including legal action against some Chinese scientists based in the US. In this talk I sketch out the background geopolitical issues that have received little attention but that provide context for the regulation of CRISPR and related technologies.
Jonathan D. Moreno, PhD
David and Lyn Silfen University Professor of Ethics,
Medical Ethics and Health Policy, Perelman School of Medicine
UPenn Research Ethics and Policy Series (REPS): Jonathan D. Moreno, PhD
JUNE 3, 2019
Consent for clinical research in emergency settings: Patient-centered or pointless?
Informed consent for clinical research in the context of acute and emergent illness is widely recognized as challenging and is often not possible. There is, however, a wide spectrum of acute and emergent conditions and a similarly wide range of potential for patients and surrogates to engage in decisions about research enrollment. Dr. Dickert will focus on research designed to understand and integrate patients’ and surrogates’ perspectives on consent for clinical trials in the context of acute myocardial infarction and stroke. He will argue that involving patients and surrogates in enrollment decisions in many emergency situations is not pointless despite important limitations that must be recognized.
Neal Dickert, MD, PhD, FACC
Assistant Professor, Emory University School of Medicine
Department of Medicine, Division of Cardiology, ECCRI
Emory University Rollins School of Public Health,
Department of Epidemiology, Emory Center for Ethics
UPenn Research Ethics and Policy Series (REPS): Neal Dickert, MD, PhD, FACC
Commentary by Benjamin S. Abella, MD, MPhil, FAHA
Professor and Vice Chair for Research
Director, Center for Resuscitation Science
Department of Emergency Medicine
Perelman School of Medicine