Health Ethics Seminar and Health Ethics Week Event

Advances in Genetic Testing: Professional and Consumer Perspectives
Dick Sobsey, EdD Professor Emeritus, John Dossetor Health Ethics Centre
& Faculty of Education
Monday, 7 March 2011 12:00—12:45pm Room 1J2.47 Walter MacKenzie Health Sciences Centre
University of Alberta

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The Importance of Being Innocent: Why We Worry About Children


Joanne Faulkner's new book

The Importance of Being Innocenct: Why We Worry About Children

Joanne Faulkner’s recently published book on childhood, The Importance of Being Innocent, was the topic of an Australian Broadcasting Corporation talk show segment today. You can here the interview here; here is the url directly:

A chunk of the book can be read at the Cambridge UP website:

Dr. Faulkner is a member of the Living Archives on Eugenics in Western Canada team.  She is currently a postdoctoral fellow in philosophy at the University of New South Wales, and formerly held a Killam Postdoctoral Fellowship at the University of Alberta.


Sue Campbell, 1956-2011

It is with a deep sadness that I learned of the death of Sue Campbell, the day after she passed away.  I met Sue when she was a postdoctoral fellow at Queen’s University, where I was an assistant professor, in the early 1990s.  During that time we became friends–not especially close, but more than cordial–but over the years we did become closer friends, in part due to my moving to Edmonton in 2000, which was coincidentally Sue’s home town (even if she had left years before), and in part to a confluence of interests around memory, trauma, and feminism during the past 10 years.  Apart from social visits to Edmonton, we had caught up semi-regularly at conferences and workshops, including one organized by John Sutton in Sydney late in 2004 which first got me thinking more about collective memory and connecting that up with work I had done on appeals to “group minds” in the biological and social sciences.  Sue’s “Relational Remembering: Rethinking the Memory Wars” was already out at that time, and it was a book that I would draw from in teaching a mixed upper-level undergraduate / graduate course in early 2006.

Sue gracefully agreed to be a member of the Living Archives on Eugenics team a few years ago, even though her health situation was uncertain.  She was a member of the team of scholars and activists working with the sociologist Claudia Malacrida on “Collective Memories of Eugenics”.  I saw not only Sue’s insights about trauma and memory as being of much value to this team, but also her active involvement in the “truth and reconciliation” process then underway in connection to the history of residential schools for native and First Nations children in Canada. That made her an ideal person to also work on our “Post-Eugenic Futures” team with community leader Nicola Fairbrother.

We last met in person in October last year, where we had just under two very pleasant hours at her favourite cafe in Halifax.  It was the best two hours I spent during almost a week there–though I’m not complaining about any other forms of Haligonian hospitality in saying that.  It was just the kind of mixture of professional and personally intimate yet reseved conversation that I had always valued in Sue, a conversation peppered with the occasional outrageous joke that is seldom appreciated by (let alone made by) Canadian academics, who on the whole wear clothes that are a little too tight.  But Sue was loosely outfitted, and more comfortable in being fully human than most.  She is missed already.

Reflections on Sue are welcome in the comment thread.  My sincerest condolences to Jan, Katie, Sue and Rich, and other close family members and friends, especially in Edmonton and Halifax.  Below is the obituary that appeared in Halifax Herald on February 14th, written by her family: Continue reading

Health Ethics Seminar by Dr. Heidi Janz

Dr. Heidi Janz will be presenting a Health Ethics Seminar in Room 1J2.47 Walter MacKenzie Health Sciences Centre, University of Alberta – Friday Febraury 18 – 12:00pm – 1:00pm – This event is open to anyone interested!

“Whose Ethics Are They, Anyway?” In the spring of 2009, the Defining Disability Ethics research project commissioned the Population Research Laboratory at the University of Alberta to survey Albertans regarding their opinions on various disability-related health-ethics issues. Over 1,200 interviews with adults in Edmonton, Calgary, and other locations in Alberta were conducted in April and May of 2009. Continue reading

Two disturbing pieces of news from UK

Both concerns the Court of Protection which “has the power to make life or death decisions on behalf of some of the most vulnerable people in society” under the Mental Capacity Act 2005.

1. Court bans man with low IQ from having sex

(The judge uses the “ best interest” justification for the order.)

2. Woman with learning difficulties could be forcibly sterilized

Seattle Children’s bioethics conference will discuss prioritizing care to children “based on social, physical or mental status”

The Seattle Children’s Hospital will hold the seventh annual pediatric bioethics conference in July. This year’s theme is “Who’s Responsible for the Children? Exploring the Boundaries of Clinical Ethics and Public Policy.” On the conference page of the hospital web site, they lay out some of the issues that will be discussed. One of them goes, “Should care to children be prioritized based on social, physical or mental health status?” and there are some examples of children such as:

Children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

Children with intellectual disabilities who require special resources, yet will remain dependant on society?

Children who have mental healthcare needs?



I went to see the film Marwencol last night at the Metro Cinema; if you’re in Edmonton, you can catch it Sunday and Monday nights at either 7 or 9pm.  And if you are in St. Elsewhere, check it out when it does the rounds.  It is breath-takingly good.


The one sentence reason why?  Marwencol avoids freakification, sensationalism, and victimization in telling a powerful story that invites all three.


“Girl X”, the National Theatre of Scotland’s new production for Spring 2011

The National Theatre of Scotland will present with an original play based on the Ashley X case and its controversy. Robert Softley, wheelchair user, public speaker, actor and script writer who started the project four years ago, has written two posts on this in the theater’s blog. Continue reading

Questions about the growth attenuation working group article in HCR Part 3

The WG article makes the divide between proponents and opponents look far smaller than reality to make the controversy itself look far less grave than it actually is.

It notes at the beginning of the article that the group members share the views about profound disabilities as below.

1)    They are concerned that people with profound disabilities are devalued.

2)    They believe more investment in medical and social services is priority.

3)    They think societal attitudes toward people with profound disabilities should be improved.

4)    They also think that parents of profoundly disabled children should be “afforded respect and considerable deference in making the complex and difficult decisions unique to their child’s care.”

They can’t share the first three views, because opponents’ point is that the rationale of growth attenuation is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities. Continue reading