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.
Corbie-Smith and Michaels : Why Are Minority Groups Less Likely to Participate In Research?
More than Meets the IRB: A joint initiative of Washington University in St. Louis and PRIM&R
11 minutes 44 seconds
9 years ago
Corbie-Smith and Michaels : Why Are Minority Groups Less Likely to Participate In Research?
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 country. This distrust extends all the way back to the history of enslavement, including medical and surgical experimentation on slaves and robbery of black graves for cadavers.
African Americans are more likely to believe that doctors would ask them to participate in harmful research, expose them to unnecessary risks, not explain research, or include them in experiments without their consent.
The research community can approach and address these issues of distrust in a couple of different way.
1. Thinking About Benefit
Researchers can attempt to better convey the following benefits of research study participation to minorities:
Direct Benefit: The possibility of pulling the random card and getting the best treatment in a clinical trial
Collateral Benefits: Access to medical care during the study
Societal Benefits: How the results of the study can accrue benefit to others in the greater society
2. Consider the Role of Public Education and the IRB in Building Trust
Another approach is for the medical community not to focus on making minorities more trusting, but rather on being more trustworthy.
To illustrate this point, consider that minorities with cancer are less likely to be offered the opportunity to participate in a study. When cancer researchers were asked what they look for in an optimal subject, they replied that good candidates were compliant, spoke English, and wouldn’t be too challenging to work with. This brings up the question of who is being overlooked for these studies.
The conventional wisdom in the research community is that education is critical in enhancing the public’s trust and getting more patients interested in participating. But we really need to be thinking of education coupled with action, because passive education alone isn’t going to get it done.
To that end, the IRB needs to start asking the following questions:
How can we make sure that every eligible patient is offered the opportunity to participate and can make an informed decision?
How can we make sure every patient has the confidence to ask “Is a trial right for me?”
How can we activate the constant of community engagement in our institution’s research in a meaningful fashion?
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.
