BROADCASTS.com

This week\u2019s episode of More than Meets the IRB brings back the podcast\u2019s 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.\nRebecca 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.\nDresser 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\u2019s position when faced with a decision.\nOne 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\u2019s position.\nDresser argues for a the structural inclusion of empathy in research and regulation design by the actual inclusion of subjects\u2019 input; as she notes in Silent Partners: Human Subjects and Research Ethics, \u201cresearch decisions that rely on subject input will be ethically and practically superior to those who rely on speculation about such matters.\u201d Regulations and studies that take these considerations into account are likelier to be \u201csubject-friendly,\u201d reflecting the full scope of priorities in subjects\u2019 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.