Day 3: Better belated than never.

Although the conference came to a close on Saturday afternoon, there were several sessions we didn’t report on, which included summaries of Joanne Reimer’s talk from Friday and the closing panel presentation on Saturday. Below you can find Joanne’s summary of both her presentation, and the final panel:

Spinal Cord Injury and the Clinical Translation of Stem Cells:  Stakeholder Perspectives – Joanne Reimer, National Core for Neuroethics, UBC

On Friday, June 11, I had the opportunity to present on our research study on stakeholder perspectives regarding the clincal translation of stem cell therapy for spinal cord injury.  The presentation enabled a discussion about how primary stakeholders – people living with spinal cord injury and various health care providers – balance risks and benefits of potential stem cell therapy and how their perspectives may not align with scientific targets for clinical trials. This prompted discussion about  how primary stakeholders can inform science as science progresses to clinical trials.

Panel Presentation – “Responding to Voices”

On Saturday, June 12, the conference concluded with a Panel Presentation – Responding to Voices.  The four panelists (who’s names unfortunately escape us at the moment, and the names were not included in the program), all work for Interior Health (the regional health authority), and included a family nurse practioner, an aboriginal outreach worker, Chief, a nursing professional practice leader, and a family physician working in emergency and long term care.  The panelists offered their personal perspectives on care situations they were involved in and the ethical struggles they encountered.   Collectively, the participants’ case examples illustrated the systemic culture of “not hearing” on a personal, professional, and organizational level and the consequences of that on patients, families, and themselves as health care providers.  Their stories resonated with the audience who commended the panelists for sharing their vulnerability, humility and compassion.

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Day 2: Humility in Research and Clinical Care

Day 2 of the conference got off to an early start, beginning with several special interest group meetings, followed by a full day of concurrent sessions, including two from our own group.

CBS Neuroethics Interest Group

This year the Neuroethics Interest group welcomed its new chair, Dr. Barbara Russell, bioethicist at the Centre for Addiction and Mental Health and member of the Joint Centre for Bioethics at the University of Toronto in Toronto, Ontario. The group spoke on the CBS Executive decision on the status of the Canadian Neuroethics Interest Group, governance of the group, and the development of a tab on the (currently under re-development) CBS website for the Group. Representatives from the three main neuroethics research groups in Canada gave updates on current happenings at their respective facilities. Syd Johnson reported from the Novel Tech Ethics at Dalhousie University; Lucie Wade reported from the Neuroethics Research cohort at the IRCM in Montreal; and I reviewed the current research activities of the Neuroethics group at the University of British Columbia. The whole interest group spoke to a need for a clinical neuroethics community to discuss cases that come up in front-line work. Those who were calling for case-based discussion were not only clinicians, but bioethicists as well. Next steps include plans for thinking about a special journal issue which includes a clinical neuroethics case, followed by invited follow-up.

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Day 1: A Diversity of Voices

This conference has chosen the theme of “voices of communities” as its running conference narrative. Interestingly, on this first day of the conference we were hearing a diversity of voices from the bioethics community. In a given session, there might be a philosopher, a health care administrator, and an entrepreneur presenting one after another. And those in the audience responding to their “performances” (thanks Alistair Browne), may include physicians, academics, allied health professionals, and lawyers. Each discipline tends to have their own way of presenting their findings, which requires a certain flexibility on the part of the conference attendees to adjust their gaze towards the particular disciplinary styles.

Plenary Lecture: Voice of the Voiceless – Andrew Robinson, BC Representative for Children and Youth.

The Plenary on Day 2 of the Canadian Bioethics Society meeting was given by Andrew Robinson, the Associate Deputy Representative Advocacy, Community and Aboriginal Relations with the BC Representative for Children and Youth (RCY).  The mandate of the RCY is to support “children, youth and families who need help in dealing with the child welfare system and advocate for changes to the system itself”.  Robinson started his talk with the appalling statistic that BC leads Canada in child poverty rates and that his organization is involved in 4500 children’s lives – children whose lives are significantly affected by decisions made by the state for their care.  Aboriginal children are disproportionately affected – they make up 3% of the populuation but 50% of the children in care.  Robinson cited the UN Convention on the Rights of Children on which Canada is a signatory.  He asserted that it is a right for children to know “what’s going on in their life”.  Drawing from his work with children, he shared stories of what happens when children are listened to.  He spoke of one 7 year old girl who phoned their office and demanded to speak with the top person to ask “Can someone tell me why I can’t see my Mom?”  Her mother had been removed from her because of mental health issues that put the daughter at risk.  No one had explained to the little girl what was going on in her life.  In another case, an abused child kept telling social workers that it wasn’t his father abusing him, but his mother.  Based on the mother’s account the father was removed from the home.  Only when Robinson’s organization got involved was the child heard, and made safe.   Robinson feels that it is our obligation to listen to the voice of children and make sure it is heard. “Ethics”, Robinson says,  “is humanizing each other.” Continue reading

Opening Night: CBS Kelowna

“Holding space for possibilities in a time of uncertainty” – Carole Robinson, on her definition of hope.

Carole Robinson, from UBC Okanagan, gave the plenary talk last night to open the conference. She approached end-of-life issues from a relational ethics perspective. In particular, she concentrated on emphasizing the need conversations with families around advanced care planning. Robinson’s take on relational ethics was inclusive of both individualistic perspectives on autonomy and decision-making, in addition to relational views which emphasize human relationships as being crucial. For example, Robinson advised shifting the question from “what do you want” to “if you can’t speak for yourself, how would you guide your family to speak for you”? This question would thus open up the ethical space for a larger conversation that enables dialogue around options for care. This may include, for example, what would a do not resuscitate order (DNR) look like, and how successful a DNR would likely be. Robinson reported that most conceptions of interventions such as DNR come from popular medical television dramas which sensationalize high success rates. Although much of Robinson’s presentation has been an important topic of discussion for many years, her plenary was a call to action for medical professionals to begin the advanced care planning conversation with their patients and families.

Today, Thursday June 10, we look forward to the plenary session on child and youth welfare, and concurrent sessions on clinical equipoise, the ‘hidden curriculum’ in post-graduate ethics training for psychiatry residents, end-of-life issues, and autonomy and decision-making in plastic surgery.

Blogging Canadian Bioethics: Kelowna 2010

The 21st Annual Canadian Bioethics Society Conference will be taking place this year in Kelowna, British Columbia from June 9th – 12th. The theme of this year’s conference is “Voices of Communities”.

Like last year, I will be blogging live from the conference. However this year I won’t go at it alone, as I’ve managed to coerce a few other UBC Neuroethics folk to contribute to conference blog posts. These include Joanne Reimer and Elana Brief, who both will be presenting papers. Joanne will be discussing her study, Spinal Cord Injury and the Clinical Translation of Stem Cells: Stakeholder Perspectives, June 11 at 10:30 am. Elana will be presenting Protecting or Silencing: The Benefits and Harms of Community Anonymity, the same afternoon at 2:00 pm. Check the official program for room designations. Research Coordinator Emily Borgelt will also post her reflections on sessions during the conference.

For those interested, the Canadian Neuroethics Interest Group will be held Friday, June 12th at 7:30 am in the Selkirk room. Yes. That is a.m. as in ante meridiem as in morning. Early morning. See you there!

Conference Webpage: http://en.cbskelowna2010.ca/

Image source: CBS Kelowna

Blogging Canadian Bioethics: Day 3

So many sessions, so little time. It really is a shame. The quality of sessions this year was truly remarkable, so it was difficult to decide on what to see. On Saturday morning I sat down with my breakfast of coffee, muffins and fruit and took a good long look at the program. After Bernard Keating‘s plenary lecture entitled, Squaring the circle: reconciling evidence and equity (which the majority of the audience was plugged into headphones with a direct line to an English translation, as the lecture was presented mainly en français), I made my way over to two fantastic sessions.

The first session by Cynthia Forlini of the Neuroethics Research Unit at the Institut de recherches cliniques de Montreal (IRCM), reported on a qualitative study on stakeholder perspectives on the use of cognitive enhancing drugs, particularly methylphenidate (I do not have the title of the presentation – it was unfortunately absent from the conference program and I lazily didn’t bother to write it down). The presentation was based upon a paper Forlini co-authored with supervisor Eric Racine in press for Neuroethics entitled, Autonomy and Coercion in AcPicture 8ademic “Cognitive Enhancement” Using Methylphenidate: Perspectives of Key Stakeholders. Forlini focused on the perspectives of University students using methylphenidate (MPH) to improve alertness and academic performance. She argued that the social context wherein these drugs are taken and obtained is of crucial importance, as many students reported feeling ‘coerced’ to take MPH in these settings to improve their academic performance. Moreover, the impact of social pressures to take cognitive enhancing drugs significantly impact the individual’s autonomy, such that it may cause a “funnel phenomenon” (see both the article and the figure in this post) leading to social acceptance of this type of enhancement despite beliefs in an individuals autonomous choice. During the discussion period, Forlini was hesitant to call for regulation of cognitive enhancers for use in ‘healthy’ populations, in spite of a recent high-profile commentary in Nature by Greely, Sahakian, Harris, et al. who advocate for responsible use and regulation. Forlini stated that she believes it may be too premature to call for regulation on the use of cognitive enhancing drugs in healthy individuals, as more integration of stakeholder perspectives is needed to inform future public health policy discussion.

Up next was Jennifer Bell from UBC. The title of her presentation, Rights, Risks and Smoking: how ‘denormalisation’ mediates patient-provider interactions in primary case settings, was in many ways a response to Bayer (2008) who justified the use of stigma campaigns to “effectively reduce the prevalence of behaivors linked to disease and death” (actually, volume 67 issue 3 of Social Science and Medicine is devoted to the notion of stigma, including a nifty little back-and-forth between Burris and Bayer). Bell and her co-authors argued that the success of smoking denormalisation campaigns can be witnessed in the stigma attached to smoking, and smokers. However, can stigmatising a group ever be justified as Bayer suggests? Bell and her co-authors disagree. In their analysis, they explore some of the ethical and policy implications of denormalisation strategies which construct health care as a privilege that smokers have forgone the ‘right’ to access. Moreover, Bell reminded us that the more severe health consequences of smoking tend to be greater associated with lower socio-economic status (SES) and that smoking denormalisation efforts further marginalise low SES individuals.

During the lunch hour, UBC’s own Michael McDonald was the recipient of the CBS Lifetime Achievement Award. Dr. McDonald has had a distinguished career in the area of research ethics and other areas of applied ethics. He is the founding director of the Centre for Applied Ethics at UBC and continues to significantly contribute to the ethics literature and actively participates in many ongoing projects. A well deserved honour.

Instead of attending more concurrent sessions in the afternoon, I attended a workshop entitled, Qualitative Ethics Research: Evidentiary Needs and Directions. This session was extremely useful, as we outlined various methods and methodological approaches to qualitative ethics research (not to be confused with qualitative research ethics), and discussed amongst the group some of the challenges that people have encountered in their own work. Although worthwhile, I was tempted by another session titled Conceiving the Post-Prozac Self which was occurring at the same time. Oh well. Can’t win ’em all.

Blogging Canadian Bioethics: Day 2

I realize that it may appear odd that I’m starting with the events of Day 2, but unfortunately I don’t have anything to post about Day 1 – I missed Maude Barlow’s plenary lecture on “Can Science Solve the Global Water Crisis?”, as I was locked up in my hotel room cramming everything there is to know about neuroimaging and genetics in preparation for my talk. In what follows I’ll describe a few of my highlights from Day 2 of CBS.

07:30: I arrived at the Hamilton Convention Centre and dragged my feet to the closest coffee dispenser. After filling my cup and grabbing some conference breakfast, I went and found the meeting of the Canadian Neuroethics Interest Group. After the short introductions (we are an ‘intimate’ group) there were some administrative matters to attend to, and a review of some of the major neuro-ethics projects that are going on, mainly in eastern Canada, such as the Neuroethics Net project. I took an opportunity to plug this blog, so perhaps we may see some additional contributors in the days to come.

09:00: It was time for the day’s plenary, a talk by Jerome C. Wakefield from NYU. As mentioned in my previous post, I was really looking forward to hearing Dr. Wakefield, particularly because his title was fairly captivating: The Loss of Sadness: Are we Misdiagnosing Normal Human Emotion as a Mental Disorder? Unfortunately I wasn’t so captivated by the talk. It wasn’t that Dr. Wakefield was not engaging – he is, in fact, an excellent speaker – it was that he did not, in my opinion, present anything new (he drew largely from his book). Based on the rhetorical slant of his title, it is fairly clear to what Wakefield’s perspective is on this matter, and he provided the typical ‘evidence’ to support his claims: the DSM-III revolution, anti-depressant prescriptions are on the rise. These were followed by the presentation of several advertisements for Prozac, Paxil, Effexor, etc throughout the years and how these ads were constructing or medicalising sadness, ‘normal’ anxiety and day-to-day stressors as life-style problems requiring medication. Giving this talk to an audience of bioethics folk, he was preaching to the choir. While an incredibly interesting topic, I was hoping to find something new. The one thing I did take from his talk, however, was the possible implications of a “spectrum-based” understanding of mental illness. One criticism of DSM-based diagnoses is that is constructs categorical ideas of illness and does not account for the wide-range of symptomatic experience by people who experience symptoms associated with particular diagnoses. However, as Wakefield pointed out, if clinicians suggest that an individual who is experiencing depressive symptoms fall along a spectrum, we risk further medicalising those points to which the individual falls, thus constructing the non-extreme ‘sadness’ end of the depression-spectrum as a medical problem.

10:30: Concurrent sessions. It was my turn to present and I was sandwiched between two excellent presenters with two very interesting topics. The first was P.H. Strachan from Hamilton who presented Exploring Uncharted Territory: Mapping the Ethical Terrain in Consent Narratives of Patients with Implantable Cardioverter Defibrillators. This presentation reported on a qualitative study exploring perspectives of individuals who have had a implantable cardioverter defibrillator (ICD) inserted. I’m not going to go into much detail on the presentations, but I wonder what the difference would be – if any – on comparing narritives of those who have had an ICD vs. those who had deep brain stimulation.  This was followed by my presentation which had the fairly un-sexy title, Navigating the Ethical Space of Imaging Genetics: Clinical Translation of Neuropsychiatric Research. Afterwards, Janice Graham presented her paper on Just Evidence in Assessing Risk in Emerging Health Care Products and argued for for more “openess” in the clinical trial process and increasing public access to the information.

12:00: Lunch. and more coffee.

13:30: TCPS Panel. I regrettably missed this. I think I was still slightly jet lagged and couldn’t keep my eyes open despite the over abundance of cognitive enhancers available (i.e., bad conference coffee). Perhaps I should have inquired amongst my colleagues for modafinil (bad neuro-ethics joke).

15:30: Concurrent sessions round 2. While there were tons of really interesting abstracts too see, I moderated a really interesting one as well – one on clinical ethics. Alister Browne from Vancouver discussed aggressive discharge planning, Rosanne Beuthin from Vancouver Island Health Authority on developing an island-wide clinical ethics program, and Sally Bean from Toronto discussed her proposal for a hybrid taxonomy clinical and organizational ethics.

All in all a great but long day. Since it was game 7 of the Stanley Cup finals, I was itching to find somewhere to watch the game. Naturally, the neuroethics folk from Montreal had the same idea. Good times!

Blogging the 20th Annual Canadian Bioethics Society Conference

The 20th Annual Canadian Bioethics Society Conference – “Just Evidence?” – will be held this week in Hamilton, ON, Canada. I’ll be presenting a paper on ethical issues in the clinical translation of imaging genetics research. I’m going to try and blog as much as I can from the conference, as long as I can access internet from somewhere. From a brief glance at the program it appears that there will be at least some neuro-ethics content: I noticed a couple presentations by Eric Racine’s group on Deep Brain Stimulation, and one of the Keynote speakers, Jerome C Wakefield, will be speaking on “The Loss of Sadness: Are We Misdiagnosing a Normal Human Emotion as a Mental Disorder?” After recently reading the book Shyness: How Normal Behavior Became a Sickness by Christopher Lane, I’m looking forward to see what Wakefield has to say. Glad to see the CBS incorporating mental health ethics into the program.

Next stop, Hamilton.