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.
Frederic Koning: The IRB and the Community It Serves
More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R
15 minutes 25 seconds
8 years ago
Frederic Koning: The IRB and the Community It Serves
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 minister—how he perceives the role.
After exploring what IRBs owes its community, we discuss how Koning’s own personal background with family members in clinical trials informs his work with the IRB.
The episode closes with an acknowledgment that “scientific or medical naiveté” on the part of the non-scientist IRB member can open up important lines of ethical inquiry that experts wouldn’t necessarily think to examine.
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.
