More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R

More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R

A series of appropriate, relevant, and educational podcasts, designed to illuminate the compelling need for the consideration of research ethics in research protocol writing and review, and across the research enterprise. The podcast will feature a series of interviews, panel discussions, and reviews of issues related to human research ethics by discussing current events in the human research world, talks with investigators and research subjects, and reviews of literature relevant to those interested in research ethics.

Episodes

November 1, 2017 22 mins
This week’s episode of More than Meets the IRB brings back the podcast’s very first guest! The new episode aims to shift the perspective of IRBs to include the often-neglected point of view of actual participants when designing consent. It also taps into the role of empathy and how researchers and IRB members can channel it to better protect subjects. Rebecca Dresser is an expert in biomedical ethics. She has taught law and medical...
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This episode of More than Meets the IRB takes us back to the early days of the internet, internet research, and internet research ethics. The advent of this powerful tool presented a new kind of challenge for IRBs, who must figure out whether and how the existing bioethics research principles apply in online spaces. Elizabeth Buchanan, PhD, currently serves as the acting director for the Office of Research and Sponsored Programs at...
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Today’s episode of More than Meets the IRB explores the research ethics field’s origin and the values behind its foundation. Given the impending implementation date of the revised Common Rule, now is an excellent time to reflect and discuss the research ethics field, the history of the IRB, and the reasons why it all started. While experience in the field research ethics abounds, no collected body of personal narratives on the subj...
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In this installment of the More than Meets the IRB: A Joint Initiative of Washington University in St. Louis, and PRIM&R, we talk about the ethical and regulatory considerations of research on medical practices (ROMP). Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics and a pulmonologist at Seattle Children’s Hospital, recently published a study on the ethical and informed consent considerations of r...
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In this episode of More than Meets the IRB: A Joint Initiative of Washington University in St. Louis and PRIM&R, we speak with Dr. Robert Klitzman about transparency and consistency of IRBs in addition to their sometimes-fraught relationship with investigators. Dr. Klitzman is Professor of Clinical Psychiatry in the College of Physicians and Surgeons and Director of the Masters of Bioethics Program at Columbia University. He is th...
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In this episode of More than Meets the IRB: A Joint Initiative of Washington University in St. Louis and PRIM&R, we speak with Fred Koning, M.Div, Th.M, M.S., about the role of the non-scientist community member on the IRB. The non-scientist member (often discussed as the “community member”) role is “notoriously” difficult to define, and in this episode we discuss with Koning—a longtime non-scientist IRB member and former parish m...
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On today’s episode of More than Meets the IRB, we talk with PRIM&R Executive Director Elisa Hurley about the controversial elements of the NPRM and those which ultimately made it into the final rule. This episode considers challenging questions about the future of research: what might change in how we build policy within the United States? Dr. Elisa Hurley is the Executive Director of Public Responsibility in Medicine and Researc...
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In today’s episode of More than Meets the IRB, we hear from awardee of the Presidential Medal of Honor Dr. Anthony Fauci on some of the ethical challenges he faced in addressing the HIV/AIDS pandemic. It’s an engaging and wide-ranging narrative: from Fauci’s publicly denouncing the FDA’s process of delivering certain drugs to individuals to his receiving presidential acknowledgement for a creative idea of how to bring drug access t...
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In today’s episode of More than Meets the IRB, we listen in on a conversation from PRIM&R’s AER14 Conference among members of Henrietta Lacks’ family, a member of the NIH, and a representative from Johns Hopkins University. We hear the initial perspectives and processes the Lacks family went through in understanding the choices they had to make regarding genomic data from the HeLa cells, in addition to what has changed since Rebe...
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Today’s episode of More than Meets the IRB investigates the role of ethical review in a dramatically changing scientific landscape where ineptitude, not ignorance, is becoming a focus of public health. Dr. Atul Gawande reveals a practical solution that is successfully addressing ineptitude among surgery teams across eight different locations around the world. Renowned speaker Dr. Gawande is a general and endocrine surgeon, profess...
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Today’s episode of More Than Meets the IRB includes segments from a panel discussion entitled “Increasing the Public’s Understanding of Clinical Research” and focuses on the question of why minority groups are less likely to participate in research. The answer revolves around the issue of trust. Distrust of research among African Americans stems from a history of racial discrimination, exploitation and ethical misconduct in this c...
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Dr. Susan Lederer is the chair of the Department of Medical History and Bioethics at the University of Wisconsin, and the author of "Flesh and Blood and Subjected To Science". During this panel from the 2014 Advancing Ethical Research Conference, Dr. Lederer discusses the significant and compelling role Henry K. Beecher played in the world of clinical research ethics with his paper Ethics and Clinical Research - http://www.nejm.org...
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Today we’re talking to Karen Masterson, the scientific journalist who wrote The Malaria Project, a book detailing the history of the US government’s attempts to find a cure for malaria during World War II. Karen discusses the role journalism plays in research ethics and how the scientific community’s treatment of human research participants has shifted dramatically since the 1940s.
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In this panel session from the 2013 PRIM&R Advancing Ethical Research Conference, we continue to look at the shifts and trends in social media use that impact the way we culturally perceive privacy and risk. The speaker is Dr. Joseph Konstan, a professor in the department of computer science and engineering at University of Minnesota who has conducted research in the field and also advises the IRB on data security and IT issues re...
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With the proliferation of social media in our daily lives, the way we communicate has been completely transformed. Our guest is Jeff Hancock, formerly a professor of information science and communication at Cornell and currently a communications professor at Stanford, who is well known for his research and TED Talk on how people use deception with technology.
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In this podcast, Dr. Ochsner looks at the complicated nature of consent in neuroscience and behavioral research, acknowledging that the risks and benefits of this type of research can be hard to define, making it difficult for IRBs to review.
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During this podcast, we talked to Nicolle Strand and Elizabeth Fenton of the Presidential Commission for the Study of Bioethical Issues (PCSBI), which is an incredible but surprisingly underutilized resource when it comes to reviewing human subjects research. We are going to specifically discuss the PCSBI's report Gray Matters: Integrative Approaches for Neuroscience, Ethics and Society, which looks at the ethical issues associated...
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Today we’re learning from John Wilbanks, chief commons officer at Sage Bionetworks, who has authored numerous publications about data sharing. On this panel, The Evolving Nature of Privacy and Confidentiality from the 2014 AER Conference, he discusses the evolving nature of privacy, confidentiality and anonymity when it comes to collecting and analyzing “big data.”
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Camille Nebeker: Goals for Improving the Informed Consent Process in Behavioral Research by Washington University in St. Louis and PRIM&R
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The issues surrounding human subject protections and the participant-researcher relationship do not lie in technical non-compliance. The problem lies with the human ability to be trusted and to be counted as trustworthy. The words ‘trust’ and ’trustworthiness’ are not found in guidance provided by federal agencies. These words are much more associated with human relationships and friendship.
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