“Nothing is for sure,” said Raul Alvarez at the end of an interview on the opening night of the CBHD conference on neuroethics. He had been telling participants from all across the U.S. and half a dozen countries overseas about his younger brother, Mario. Mario has been severely neurologically disabled due to traumatic brain injuries sustained in a hit and run incident in March of the year 2000.
The story of his medical care, of the ethical issues faced, of the health provider who continues to sue the family over bills that should be paid by government sources, of the attorney who has provided free assistance, and of the extraordinary commitment of the family who are with Mario 24/7, brought tears to some eyes. Invited to share one final message, Raul reminded us all of the ever-present uncertainties in clinical practice—sometimes about diagnosis but always about prognosis. The family wanted to stress to professionals the importance of hope, and had certainly lived and worked by that principle themselves.
That extended interview followed a warm welcome by Dr. Greg Waybright, President of Trinity International University in Deerfield, Illinois, on whose campus the conference was held as usual; and an introduction to the scope of the concept of neuroethics by Dr. Bill Cheshire, who heads CBHD’s neuroethics working group.
In the second session that night, theologian Scott Rae answered the question “How Much Brain do I Need to be Human?” by confirming that while we are alive, we are all human beings. He went on to make the point, though, that in some clinical situations it does not necessarily follow that we need to be kept alive at all costs. Questions of tube feeding in the permanently unaware were later addressed in another plenary, and in a parallel paper presentation.
On Friday morning, Dr. Cheshire began to contrast therapy versus enhancement in an entertaining and highly visual session on “Boosting Your Brain Power.” Few will forget his four categories of boost: the “fizzle” (various proprietary products claimed without objective evidence to improve cognition); the “perk” (a fascinating discussion of coffee and tea and their history); the “jolt” (milder categories of prescription only medication); and the “shock” (stronger categories still). He ended by contrasting the means and ends of chemical self-enhancement (where we can never be sure what we are doing—nothing is for sure) with the goal of growing spiritually as disciples of Christ.
This address was followed by one from psychiatrist and palliative care specialist Dr. Jarry Richardson, who further explored the widespread use of Prozac and Ritalin. He shared some personal experiences, which helped a number present.
More downtime was planned for this year’s conference, but topic-specific networking groups and parallel paper presentations were options around lunchtime and early afternoon. At any one time, there was a choice of six papers on offer, and a wide range of subjects was considered in popular meetings. Audio recordings of all parallel papers are available for purchase.
In “Hollywood Bioethics,” a panel with interestingly complementary perspectives considered clips from three recent mainstream movies with neuroethics themes. Eternal Sunshine of the Spotless Mind was the lead offering. A very convincing medical clinic in the not too distant future offers the erasure of painful memories, and a couple who split up and separately go through this process to wipe out all recall of each other are followed. The director’s style made this difficult to follow but rewarding, and the entire movie was later screened to an audience of 60+ as optional Friday evening activity.
50 First Dates used comedy, sometimes crassly, to explore issues around short-term memory loss after head injury. One of the panelists described it as a “great chick flick” she would certainly use in her bioethics film discussion group. After a short introduction, a brief clip from The Final Cut reviewed the use of neurotechnology to rewrite personal history and produce a sanitized movie that could replace a funeral service. It is interesting that Hollywood is sometimes far ahead of the curve in raising issues concerning human dignity in bioethics.
On the third day, nurse researcher Cindy Province considered “Coma: Anyone Home?” and again, “nothing is for sure” would be one way of summarizing the many mistakes we make in diagnosis and prognosis. Estate planning attorney Jason Havens, from Christian Legal Society, one of five co-sponsors of the conference, gave helpful practical legal advice about capacity issues for clinicians and caregivers. This advice could be summed up as: Talk it over in advance and appoint someone to speak (if ever necessary) on your behalf.
After more topic groups and parallel paper options, the conference closed with an inspiring double act entitled “Changing Times.” First, son Dr. Tom Pellegrino, a neurologist in Virginia, reviewed four common neurological diseases and the advances that have recently been made in treating them. He introduced the ethical implications of some of these advances, before handing over to his father, the very well known Dr. Ed Pellegrino. Among his many appointments, Dr. Pellegrino is a Senior Fellow of CBHD, but of course, he is now known globally as the Chairman of the U.S. President’s Council on Bioethics. Centering his talk on conscience, he reviewed the changes in ethics in his own lifetime, as “medical ethics” gave way to “bioethics.” There was wit and wisdom in a carefully considered presentation, which rightly ended with a standing ovation for a man who epitomizes the acknowledgment of the central place of human dignity in bioethics.
While “nothing is for sure” is almost always true in medicine and healthcare, the many Christians present, from many different backgrounds, had their confidence in eternal truth and the hope it gives strengthened during a fascinating three days.
Around 40% of the conference participants were there for the first time, and many commented that the average age has become younger. There are exciting plans to stimulate and network a growing number of special project groups, to stay ahead of the curve on bioethics issues, and to communicate the human dignity message more widely.
CBHD Staff, "Neuroethics: The New Frontier Conference Report ,” Dignitas 12, no. 2 (2007): 1–2.
