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Roundtable Discussion: Seeking Guidance for Recommendations

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its examination of the ethical issues associated with neuroscience research with an in-depth roundtable discussion involving both members and presenters.

Amy Gutmann, Ph.D., Chair of the Bioethics Commission, asked “If there was one thing and only one thing that you think is ripe for our recommendation or our recognizing as a finding, what would that one thing be?”

The following are highlights from the discussion that ensued:

“Don’t forget what makes neuroscience different from other health conditions, which is its impact on behavior. If you are going to look at behavior…people with the lived experience need to be at the table.” – Patrick Corrigan, Psy.D, Distinguished Professor of Psychology, Illinois Institute of Technology.

“We could use some help with a more fine-grained and maybe even a more neuroscience-informed understanding of this concept of diminished capacity. What we are thinking about is the capacity to understand risks and benefits….Do I rank risks in the same order of people who have good cognitive capacity?” –  Dr. Gregory Simon, Chair of the Scientific Advisory Board of the Depression and Bipolar Support Alliance (DBSA).

“The number one take away for me would be to consult novel models for conducting research on patients with reduced capacity…My concern is to be careful to avoid regulations without evidence of their practical impact.” — David W. Wright, M.D., Associate Professor of Emergency Medicine and Director of Emergency Neurosciences at Emory University School of Medicine.

“I believe the data sharing issue is just huge. If you take the Alzheimer’s Disease Neuroimaging Initiate, all the partners agreed from the outset that sharing would occur. There is now more science published from people who were not originally funded from that work than there is science published by those who were initially funded. We more than doubled the return on that effort.” — Harry Johns, President and CEO of the Alzheimer’s Association.

“Take into account the [differences in] individual patients. There will be individuals capable of consenting to research and capable of having a good experience, and there will be those who initially consent and then decide to drop out, and others who will experience distress and have to be withdrawn. So avoid sweeping statements [about patient capacity].”  — Rebecca Dresser, J.D., Daniel Noyes Kirby Professor of Law, Professor of Ethics in Medicine, Washington University, St. Louis.

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