More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R
Washington University in St. Louis and PRIM&R
21 episodes
7 months ago
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 students about legal and ethical issues in end-of-life care, biomedical research, genetics, assisted reproduction, and related topics. She has written extensively in her field and is the co-author of a casebook on bioethics and law and a book on the ethical treatment of animals. She is the sole author of Silent Partners: Human Subjects and Research Ethics.
Dresser cites her own experience with a cancer diagnosis to illustrate and explicate a critical distinction: that between hypothetical research subjects and the actual, living individual who is faced with a life-changing decision. Dresser suggests that our research culture has been built around the former, neglecting the very real implications that very real people face. In considering research ethics, the research community needs to be more attuned with the potential trial participant’s position when faced with a decision.
One of the things IRBs and ethicists underestimate, according to Dresser, is the powerful influence doctors have over their patients. The moment when a patient hears bad news can be overwhelming; as such, the consent decision is somewhat conditioned. Ethically, it is important to understand the role that trust of doctors plays in understanding a patient’s position.
Dresser argues for a the structural inclusion of empathy in research and regulation design by the actual inclusion of subjects’ input; as she notes in Silent Partners: Human Subjects and Research Ethics, “research decisions that rely on subject input will be ethically and practically superior to those who rely on speculation about such matters.” Regulations and studies that take these considerations into account are likelier to be “subject-friendly,” reflecting the full scope of priorities in subjects’ lives. Researchers could develop their sense of empathy by participating in other studies, Dresser suggests, exposing them both to the practical routines and the emotional implications of participation.
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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 students about legal and ethical issues in end-of-life care, biomedical research, genetics, assisted reproduction, and related topics. She has written extensively in her field and is the co-author of a casebook on bioethics and law and a book on the ethical treatment of animals. She is the sole author of Silent Partners: Human Subjects and Research Ethics.
Dresser cites her own experience with a cancer diagnosis to illustrate and explicate a critical distinction: that between hypothetical research subjects and the actual, living individual who is faced with a life-changing decision. Dresser suggests that our research culture has been built around the former, neglecting the very real implications that very real people face. In considering research ethics, the research community needs to be more attuned with the potential trial participant’s position when faced with a decision.
One of the things IRBs and ethicists underestimate, according to Dresser, is the powerful influence doctors have over their patients. The moment when a patient hears bad news can be overwhelming; as such, the consent decision is somewhat conditioned. Ethically, it is important to understand the role that trust of doctors plays in understanding a patient’s position.
Dresser argues for a the structural inclusion of empathy in research and regulation design by the actual inclusion of subjects’ input; as she notes in Silent Partners: Human Subjects and Research Ethics, “research decisions that rely on subject input will be ethically and practically superior to those who rely on speculation about such matters.” Regulations and studies that take these considerations into account are likelier to be “subject-friendly,” reflecting the full scope of priorities in subjects’ lives. Researchers could develop their sense of empathy by participating in other studies, Dresser suggests, exposing them both to the practical routines and the emotional implications of participation.
More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R
18 minutes 29 seconds
9 years ago
The Century of the System with Dr. Atul Gawande
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, professor at the Harvard School of Public Health and Harvard Medical School, executive director of a lab for health-systems innovation, and chairman of a nonprofit making surgery safer globally.
“We’ve entered a world where ineptitude has become as big a problem as ignorance.” – Dr. Atul Gawande
Ignorance and Ineptitude
The major change in knowledge today is the emphasis on systems over research. There are two sources of failure in anything humans set out to do:
1. Ignorance—we have not learned how to solve all of our problems, but research has helped close our gaps in knowledge tremendously.
2. Ineptitude—knowledge may exist, but people fail to apply the knowledge correctly. Today, we may know a great deal but fail to put the pieces together in solving a problem. What is the best way to address this?
The Importance of Effective Medical Systems
A three-year-old girl in Austria fell into an icy pond and drowned. After not breathing for 30 minutes and having a body temperature of 30 degrees below normal, she was miraculously restored to a breathing, functional state through CPR and several machines over a period of weeks.
She had multiple disabilities initially, but after two years, she regained all of her faculties and became a typical five-year-old girl. The revealing truth was that she was restored—not with cutting-edge medicines or technologies—but with a successful system that coordinated hundreds of professionals in executing standard medical procedures.
The Ethics of Implementing Systems
• Ethical questions to review boards such as IRBs are now posed amidst the democratization of once-elite methods of science.
• The “province of professors” has become the domain of medical students, nurses, and pharmacists who interact with data and trials in research.
• We are tinkering with systems that have known levels of harm, trying proven ideas but not understanding how to put the pieces together. In this setting, how can we ensure the ethics of implementing effective systems?
More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R
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 students about legal and ethical issues in end-of-life care, biomedical research, genetics, assisted reproduction, and related topics. She has written extensively in her field and is the co-author of a casebook on bioethics and law and a book on the ethical treatment of animals. She is the sole author of Silent Partners: Human Subjects and Research Ethics.
Dresser cites her own experience with a cancer diagnosis to illustrate and explicate a critical distinction: that between hypothetical research subjects and the actual, living individual who is faced with a life-changing decision. Dresser suggests that our research culture has been built around the former, neglecting the very real implications that very real people face. In considering research ethics, the research community needs to be more attuned with the potential trial participant’s position when faced with a decision.
One of the things IRBs and ethicists underestimate, according to Dresser, is the powerful influence doctors have over their patients. The moment when a patient hears bad news can be overwhelming; as such, the consent decision is somewhat conditioned. Ethically, it is important to understand the role that trust of doctors plays in understanding a patient’s position.
Dresser argues for a the structural inclusion of empathy in research and regulation design by the actual inclusion of subjects’ input; as she notes in Silent Partners: Human Subjects and Research Ethics, “research decisions that rely on subject input will be ethically and practically superior to those who rely on speculation about such matters.” Regulations and studies that take these considerations into account are likelier to be “subject-friendly,” reflecting the full scope of priorities in subjects’ lives. Researchers could develop their sense of empathy by participating in other studies, Dresser suggests, exposing them both to the practical routines and the emotional implications of participation.
