Dr. Judy Illes awarded the 2018 Patricia Price Browne Prize in Biomedical Ethics


Neuroethics Canada congratulates Dr. Judy Illes who has been awarded the 2018 Patricia Price Browne Prize in Biomedical Ethics!

The formal announcement is forthcoming in the Journal of the American Medical Association.

Dr. Illes will receive the award at the University of Oklahoma in early 2019.

 


Patricia Price Browne Prize in Biomedical Ethics
The Patricia Price Browne Prize in Biomedical Ethics recognizes the importance of ethics in confronting the critical biomedical issues of the day.

The goal of the Prize is to foster the development of the highest professional standards in health care through discussions of the ethical issues related to complex healthcare topics. The Prize, supported by the Children’s Medical Research Institute/Patricia Price Browne Distinguished Chair and administered through the University of Oklahoma, College of Medicine, will be presented during a visit to the University of Oklahoma Health Sciences Center Campus. The recipient is expected to deliver one formal lecture and participate in informal discussions on ethical issues with students, physicians-in-training, faculty, and the community.


Patricia Price Browne
Patricia Price Browne, an Oklahoma City resident who was a highly respected and creative worker for the causes of women’s and children’s health stayed true to her personal mottos to “spend time wisely with people and projects that matter” and “work and play out of a sense of love and joy, not duty”. In creating this prize in her memory, friends noted that her innate goodness and straightforward honesty attracted many to her side. Her husband Henry and their two children, Matthew and Whitney, were the people who mattered most to her but her discipline and dedication allowed her to devote significant energy to community causes. Patricia captured the meaning of what it meant to be a quality person; she was leader with a gift for turning dreams into reality. She is remembered for her ability to frame the most complex discussions in the context of “What is the right thing to do?”

Her commitment to health care was constantly reflected in the numerous ways she provided leadership for causes that enhanced the health of women and children. What an amazing record of active participation she illustrated. She was president and a founding board member of Children’s Medical Research Institute, a co-founder of the University of Oklahoma Institute for Breast Health and a founder of the Friends of the Institute for Breast Health and served as its first Chairman. Patricia co-founded the Oklahoma Breast Cancer Project.

Because of her special commitment to health care, Patricia’s friends and family support the Prize as a fitting memorial to her legacy. The emphasis in ethics well reflects Patricia. Through her intellect and integrity, she was able to see beyond the surface and focus on what was genuine and ethical. Her compassion for serving others was based on providing a better life for all. As a tribute to Patricia Price Browne in 2003, husband Henry Browne, Jr., The Friends of Patricia Price Browne Committee, and Children’s Medical Research Institute funded an Endowed Chair in Patricia’s name to ensure quality health care for the children of Oklahoma. The chair proceeds are designated for research and education programs and to establish a biennial award in biomedical ethics to physicians, nurses, research scientists and others who demonstrate the highest professional standards in the medical or professional ethics fields.

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#SupportTheReport features Neuroethics Canada’s Dr. Judy Illes!

Neuroethics Canada’s Dr. Judy Illes explains why she is participating in the #SupportTheReport campaign! You can watch the video here:

For more information on #SupportTheReport, visit: https://supportthereport.ca/

Neuroethics Canada’s Dr. Judy Illes Appointed to the Order of Canada

On December 29, 2017, Her Excellency the Right Honourable Julie Payette, Governor General of Canada, announced 125 new appointments to the Order of Canada  We are pleased to share that Neuroethics Canada’s Dr. Judy Illes was included in this year’s appointments! 
 
Dr. Illes was appointed as a Member of the Order of the Canada for her contributions to the field of neurology, including pioneering research that has highlighted the ethical, social and legal implications of advances in neuroscience.
About Dr. Judy Illes
Dr. Judy Illes, Professor of Neurology and Canada Research Chair in Neuroethics at UBC, is Director of the National Core for Neuroethics at UBC, and faculty in the Djavad Mowafaghian Centre for Brain Health at UBC and the Vancouver Coastal Health Research Institute. Dr. Illes also holds affiliate appointments in the School of Population and Public Health and the School of Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA, USA.
 
A pioneer and eminent scholar in the field of neuroethics, she has made groundbreaking contributions to ethical, social, and policy challenges at the intersection of biomedical ethics and neuroscience, with a specific focus on aging and dementia, addiction and mental health, neuroimaging, stem cells, cross-cultural values, and the commercialization of health care.
 

She is Vice-Chair of the Internal Advisory Board of the Institute of Neuroscience, Mental Health and Addiction, Vice Chair of the Standing Committee on Ethics for the Canadian Institutes of Health Research, and an inaugural member of the Michael Smith Foundation for Health Research Leadership Forum. Dr. Illes is an elected fellow of the Royal Society of Canada, of the Canadian Academy of Health Sciences, and of the American Association for the Advancement of Science.


About the Order of Canada
Established in 1967 by Her Majesty Queen Elizabeth II, the Order of Canada is the cornerstone of the Canadian Honours System, and recognizes outstanding achievement, dedication to the community and service to the nation. The Order recognizes people in all sectors of Canadian society. Their contributions are varied, yet they have all enriched the lives of others and made a difference to this country. Since its creation, more than 6 000 people from all sectors of society have been invested into the Order. The Order of Canada’s motto is DESIDERANTES MELIOREM PATRIAM (They desire a better country). Her Majesty The Queen is the Sovereign of the Order, and the governor general is the chancellor and Principal Companion of the Order.

Thoughtfully engaging modernity

Jonathan Franzen’s diatribe article in The Guardiana preview of his forthcoming book The Kraus Project, is provocatively entitled What’s wrong with the modern world? Trotting out many standard objections to techno-utopianism, he particularly bemoans overuse of Twitter, Apple products generally, and even calls out Jeff Bezos as one of the four horsemen of the Apocalypse. But it is not the Apocalypse of the Bible to which he refers but rather the more personal apocalyptic crises that we all experience. He was introduced to this idea by the early 20th century Viennese cultural critic Karl Kraus, also known as The Great Hater, an individual with whom Franzen has been obsessed for a couple of decades. He explains that,

Kraus’s signal complaint – that the nexus of technology and media has made people relentlessly focused on the present and forgetful of the past – can’t help ringing true to me. Kraus was the first great instance of a writer fully experiencing how modernity, whose essence is the accelerating rate of change, in itself creates the conditions for personal apocalypse. Naturally, because he was the first, the changes felt particular and unique to him, but in fact he was registering something that has become a fixture of modernity. The experience of each succeeding generation is so different from that of the previous one that there will always be people to whom it seems that any connection of the key values of the past have been lost. As long as modernity lasts, all days will feel to someone like the last days of humanity.

Alexander Nazaryan is a bit dyspeptic himself in response to Franzen’s take on modernity, arguing that Franzen’s cri de coeur offers critique sans cure (Notably, Nazaryan offers no remedy either). Michael Jarvis is a bit more sympathetic to the neo-Luddism of Thomas Pynchon in his review of Bleeding Edge, the new novel by the famously reclusive author. Unlike Franzen who tells us that “Not only am I not a Luddite, I’m not even sure the original Luddites were Luddites.”, Pynchon is unabashed about his views on modernity. Like Franzen’s glorification of Kraus as The Great Hater, Pynchon is on the record as exalting Ned Lud – the original Luddite – as Badass. Pynchon argues that the 1779 movement known as Luddism was not a response to technology per se but rather class war, a reaction to the disenfranchisement of poor workers by modern machines. While there is a kernel of truth to his assertion, the mastery over technology that was wrought by the Industrial Revolution represents a cultural shift that is more than just concern for jobs. Tellingly, it was only a few decades later that Mary Shelley sat by the fireside at Villa Diodati, weaving the story that was to become the mainstay of every subsequent backlash to technology, Frankenstein, or the Modern Prometheus.

Frankenstein still touches a chord, but in today’s world it is decidedly unwise to rail against modernity. Not only will you be pilloried in the press, but even if people buy the argument they will remain in thrall to modern technology – it is just too seductive to ignore. Moreover, the rants miss the point. Personally, I want to engage with modernity and live a rich, juicy life that is authentic and true. In short, I want to flourish as a modern. The better question asks how we might embrace modern technology and do it thoughtfully. And here the best lesson comes from most surprising of sources: the Amish. This past January, I had a chance to have an extended conversation with Jamie Wetmore in his office at the Consortium for Science Policy & Outcomes at Arizona State University where he enlightened me about Amish attitudes towards technology. According to Jamey’s studies, the Amish are not anti-technology. Rather, they think often and deeply about how technology affects their values. For the Amish, these are closely interwoven with their religion, and so they choose to decline the adoption of technologies that conflict with their religious values. But the choice is active – they gather together and consider the pluses and minuses, and then collectively decide on a course of action. Those with a more secular take on the world (me!) may harbour a different set of values, but values we have, and it seems to me that is worth following the example of the Amish and ask how does modernity impact my value system? Posed in this way, the question naturally leads to answers that lack the crankiness of Franzen and Pynchon’s tirades, while providing a way to engage that is more thoughtful than the techno-utopian musings of their interlocutors: weigh your engagement with technology with your own personal values.

Ah, but you might say that knowing something is a problem and doing something about it are two different things. Small steps are often the most effective ways to modify behaviour, and here is one that might help. A common complaint about modern life is that in the middle of a conversation, someone glances at their computer or smartphone (are they even different anymore?), checking for what can best be described as I-don’t-know-what-but-something-might-be-new. The person who looks away is distracted; the one who was ignored is, well, ignored. Everyone acknowledges the problem. And everyone does it from time to time. So for the next three days, just do this: notice. Don’t chuck your technology out the window, and definitely don’t beat yourself up about it when you sneak a peek at some digital screen in the middle of a conversation. You might try practicing what the Buddhists suggest to do with any behaviour you want to forestall – get curious about it. What was being said when you looked away? How do you think the other person felt? How did you feel about the whole thing? Most of all, ask yourself whether your actions align with your values. If you want to have the exercise really bear fruit, make a note each time it happens – it could be on paper, or in some electronic file, but the simple act of jotting down what was going on when your mind drifted from present to virtual will help change your brain’s ingrained pattern of behaviour. At first it will be hard, awkward, and maybe even a bit uncomfortable. You will start out catching yourself checking your whatever in the middle of a conversation as frequently as before, but by the third day it will become a rarity. And you will be better for it.

When is it rational to be nudged?

Five years ago, Richard Thaler and Cass Sunstein published a thoughtful little book called Nudge in which they outlined a broad program for improving the outcomes of human decisions. Drawing on the maturity of the field of behavioural economics, Thaler and Sunstein outlined the myriad ways in which small changes in the environment can affect the choices we make. In the intervening years, interest on the part of governments in developing such programs has grown ever stronger. In Great Britain, the Conservative government of David Cameron established the Behavioural Insights Team in 2010, with Richard Thaler as advisor. Cass Sunstein was appointed Administrator of the White House Office of Information and Regulatory Affairs under Barack Obama, where, among other tasks, he developed government-wide regulations that nudge people in numerous ways, although exactly what was done has always been a bit under the radar. Now comes news that the US government is developing its own Behavioral Insights Team, and there is a call  for people with appropriate skills to join.

Nudging is not without its critics. Those with libertarian sensibilities are predictably outraged, even if Thaler and Sunstein described the program as an exercise in libertarian paternalism.The primary concern is that nudging infringes upon autonomy, which brings it directly into the sight lines of neuroethics. The key issues were recently summarized in a short article in The New Scientist by Evan Selinger.

Fair minded individuals may debate the degree to which the infringement upon autonomy engendered by nudges is problematic, but Gidon Felsen, Noah Castelo and I decided to take a different tack.  First of all, we reframed the issue, calling it Decisional Enhancement rather than nudging (that our reframe is, in and of itself, a bit of a nudge did not escape our notice). More importantly, we have begun to explore the question of how the public view the infringement of autonomy that decisional enhancement programs provide. Essentially, we wanted to explore the degree to which people are willing to trade autonomy for better outcomes. The results of our adventures in experimental neuroethics can be viewed in our recently published paper in Judgement and Decision Making.  One key insight is this: when people need help achieving their objectives in life, they are not loathe to give up a bit of autonomy. It does not appear to be the case that people are enthusiastic about giving up autonomy just because their objectives are aligned with the decisional enhancement program. Rather, it is when their objectives align with the program and they recognize that they are struggling with achieving that objective that the endorsement is most evident.  To put it into terms developed by Harry Frankfurt, it seems that autonomy violations are most acceptable when people recognize that their decisions are more likely to follow their lusty first-order desires – to overeat, to spend money foolishly, etc. – than their sober life objectives, what Frankfurt called second-order desires.  Viewed in this light, perhaps it is entirely rational to give up a bit of autonomy to live as we wish.

Communication with vegetative state patients: Dialogue or soliloquy?

By Ania Mizgalewicz and Grace Lee

The world first heard from Canadian Scott Routley this past week. Routley, who has been in a diagnosed vegetative state for the last 12 years, seemed to communicate to scientists via signals measures from blood flowing in his brain that he was not in pain. The finding caught the headline attention of major news sites and spurred vast public commentary. Comments ranged from fearful to hopeful about mind reading, clinical applications of technology, and the ability of this technology to allow patients to communicate their desires to live.

Leading neuroscientist Adrian Owen in London, Ontario, articulates that the technology currently allows patients to respond to yes or no questions, but may one day be used to aide in more interactive communication. Questions would center on daily living preferences, attempting to improve quality of life and health care.

The findings by Owen and his group are truly exciting and provide great hope to the historically neglected population of people with serious brain injuries. Here at the National Core for Neuroethics, we encourage more discussion about the ethical implications of this technology. Questions such as those surrounding decisions about end of life are far in the future. The focus at the present should thus remain on how to validate this technology to one day be used in the clinical setting. If clinical use will be feasible in the future, we would need to address questions about access to the technology and the impact that its availability would have on families of patients.

Great caution and restraint is needed when coupling this still emerging technology with concerns about mind reading, or clinical decision-making about end of life. Hype here unfairly detracts from the true value of this work. With one in five vegetative patients showing signs of consciousness in these studies, the focus should remain on improving their daily surroundings, providing them a means of communication, and supporting their family members. It should also spark a conversation on the effectiveness and validity of current clinical tests used to diagnose these patients at the bedside.

Top image: wellcome images / flickr
Bottom image: Noel A. Tanner / flickr