On June 28th, a group of neuroimagers, lawyers, clinicians, and ethicists gathered at Stanford to discuss issues surrounding research and care of patients in minimally conscious and persistent vegetative states. The proceedings of the meeting will be published as a special issue of AJOB-Neuroscience in 2008, but here are some highlights:
The morning public session was kicked off by a plenary lecture by Albert Jonsen (professor emeritus at U of Washington). Dr. Jonsen gave the audience a historical perspective on the ethics of neuroscience in his talk "Public policy and imaging: Historical considerations." Joseph Fins (Cornell) was the first keynote speaker with his talk titled "Neuroethics and neuroimaging: Moving towards transparency," outlining how the research community should seek to achieve transparency about how neuroimaging could and should be used in clinical settings. He recommended a pragmatist's approach, is wary of measuring consciousness and "transcendent truth," and offered specific suggestions such as moving beyond imaging snapshots to movies of clinical assessment, as well as linking imaging studies of patients with larger epidemiological studies enabled by a registry of patients. His talk was commented on by Martha Farah (UPenn), Steven Laureys (Liege, Belgium), and William Winslade (UT). The second keynote lecture was given by David Magnus (Stanford), titled "Clinical Ethics and PVS." Dr. Magnus outlined seminal clinical ethics of cases of PVS patients and the legal and societal impact, and argued that PVS as a diagnostic category "may not stand up scientifically to do the ethical work it is being relied on to do" (paraphrase). His talk was commented on by James Bernat (Dartmouth), Joy Hirsch (Cornell), and Stephen Morse (UPenn). Audio recordings of these talks and panel discussions will be available at neuroethics.stanford.edu next week (I'll announce here when they're posted).
The afternoon sessions were three working groups of 7-8 of each of the invited participants, including community stakeholders. These working groups were: Consent, Experimental Protocols, and Clinical Objectives. In these groups, participants aimed to clearly identify the current ethical issues and critical open questions in conducting research and providing care to patients in MCS/PVS states and the responsibilities to patient's families, the media, IRB and grant-making bodies, and the public. The results of each working group were reported to the general group at the end of the day, and will be published as a target article in the forthcoming AJOB-Neuroscience special issue.
The invited participants were extremely engaged in the discussions surrounding this important and poorly understood state of human existence. The conference organizers (Judy Illes and Joseph Fins) felt that new ground had been broken in identifying ethical issues and developing ways to offer guidance to the research and clinical communities. Look for the AJOB-Neuroscience special issue for a full report and open peer commentaries!
Very interesting! Thanks Emily!
Posted by: Adam Kolber | 07/25/2007 at 10:29 PM