Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because Continue reading

Future Past: Disability, Eugenics, & Brave New Worlds

Future Past: Disability, Eugenics, & Brave New Worlds. A public symposium on the history and ongoing implications of eugenics ideologies and practices for people with disabilities.
Why do these issues matter? How can we address them in teaching and pedagogy, in policy and activism, and in art?

On November 1, 2013 at San Francisco State University, Seven Hill Conference Center from 9:00 am – 8:00 pm.
The Living Archives on Eugenics in Western Canada is co-sponsoring a conference, dinner and reception plus the screening of FIXED: The Science/Fiction of Human Enhancement. Conference organizers include: Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and the Center for Genetics and Society.

Registration is free:  geneticsandsociety.org/futurepast

Future Past is the result of a cross-national collaboration among advocates and academics interested in gaining a deeper understanding of the long and tangled relationship between disability and eugenics, and the contemporary implications of genetic technologies to the lives and futures of people with disabilities.

Program – November 1, 2013

9:00 – 9:15: Welcome

  • Provost Sue Rossier, San Francisco State University
  • Catherine Kudlick, Director, Paul K. Longmore Institute on Disability

9:15 – 9:30: Table Introductions

9:30 – 11:30: What? Eugenics and Disability: Past and Present

Many people are unaware of the history of eugenics movements in North America, yet they are disturbingly relevant today.

Presenters:

  • Alexandra Minna Stern (moderator), Departments of Obstetrics and Gynecology, American Culture, and History at the University of Michigan.
  • Marcy Darnovsky, Center for Genetics and Society
  • Glenn SInclair, Living Archives on Eugenics in Western Canada
  • Nicola Fairbrother, Living Archives on Eugenics in Western Canada

Table Discussions

11:30 – 12:30 : Lunch

12:30 – 2:30: So What? The Consequences of Misremembering Eugenics

What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of “human betterment” for reproductive and disability justice?

Presenters:

  • Marsha Saxton (moderator), World Institute on Disability
  • Rob WIlson, Living Archives on Eugenics in Western Canada, University of Alberta
  • Troy Duster, Warren Institute for Law and Society Policy, University of California, Berkeley
  • Rosemarie Garland-Thomson, Emory University

Table Discussions

2:30 – 3:00: Break

3:00 – 5:00: Now What? Looking Ahead to Brave New Worlds

What is being done – and what can be done – to increase public and student understanding of the legacies of eugenics through teaching, activism and art?

Presenters:

  • Milton Reynolds (moderator), Facing History and Ourselves
  • Gregor Wolbring, Living Archives on Eugenics in Western Canada, University of Calgary
  • Kate Wiley, Lick-Wilmerding High School
  • Patricia Berne, Sins Invalid

Table Discussions

5:00 – 6:30: Dinner and Reception

6:30 – 8:00 Sneak-preview screening

FIXED: The Science/FIction of Human Enhancement

Producer/DIrector Regan Brashear will answer questions

 Future Past Nov 1

FIXED:The Science/Fiction of Human Enhancement

How do technologies that claim they will change our bodies and minds challenge our views of disability and normalcy? How might this affect what it means to be human in the twenty-first century?

These are the questions tackled in FIXED: The Science/Fiction of Human Enhancement. It’s a haunting, subtle, urgent documentary that takes a close look at the drive to be “better than human” and the radical technological innovations that some are advocating we embrace. Producer/director Regan Brashear has working on labor, race, youth, LGBTQ, and disability issues for over twenty years through documentary film, union organizing, community forums, and grassroots activism. She is co-founder of Making Change Media, which produces videos for non-profits and labor unions, as well as independent long-form documentaries such as FIXED.

Regan will be interviewed by Gina Maranto, Director of Ecosystem Science and Policy at the University of Miami’s Leonard and Jayne Abess Center, and author of Quest for Perfection: The Drive to Breed Better Human Beings.  Please join us on Thursday October 3 at 11 am PT/ Noon MST / 2 pm ET for Talking Biopolitics a live web-based interview and conversation with Regan Brashnear, Gina Maranto, and you.

Registration is required! You can register here: registration. You can read more about the film and Regan and Gina here

The Living Archives on Eugenics in Western Canada is hosting the Alberta Premiere of FIXED: The Science/Fiction of Human Enhancement with co-sponsors the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre, University of Alberta, on Friday October 18, 2013 at the Telus Centre 150, University of Alberta. Doors at 6:30 pm, film at 7:00 pm. Dr. Gregor Wolbring will join us after the film for questions and answers via SKYPE. Admission is FREE and this event is open to the public! Plan to attend!

Let’s make a baby: Pushing the boundaries of conception – CBC Radio One

CBC Radio One is exploring the ethical ramifications of cutting-edge reproductive technologies, such as three parent in-vitro fertilization and post-menopausal pregnancy. From June 25, 2013 through August 29, 2013 on CBC Radio One, Tuesday at 7:30 pm and Thursday at 9:30 pm. All ten episodes are available online here: http://www.cbc.ca/thecurrent/2013/08/06/lets-make-a-baby-pushing-the-boundaries-of-conception/

Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?

Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Edited by Gregor Wolbring, Associate Professor Community, Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Canada is now available.

Continue reading

Meet the New Eugenics, Same as the Old Eugenics

From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013

The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

Continue reading

Haraway and the (Im)possibility of Cyborg Eugenics – Presentation by Joshua St. Pierre

Last week, on March 23, 2012, Joshua St. Pierre, one of the summer interns from the Living Archives Project who is currently working on his MA in Philosophy at the University of Alberta, gave a presentation entitled, “Haraway and the (Im)possibility of Cyborg Eugenics.”

His abstract from the conference is as follows:

While the discourse of so-called “new eugenics” is becoming increasingly popular in cyberculture, I argue that new eugenics is discussed as a mere technological overlay of pre-existing eugenic ideologies, ideologies undercut by “A Cyborg Manifesto.” Donna Haraway’s cyborg resists the natural and essential properties (racial, class or genetic purity, normalized categories such as “feeble mindedness,” or binaries like primitive/civilized) which made twentieth century eugenic programs, and by extension new eugenics, possible. However, Haraway’s politically and eugenically resilient cyborg opens the possibility for a “cyborg eugenics” proper.

Instead of essential properties, Haraway argues that human diversity and biotic components must be conceived of in terms of “design, boundary constraints, rates of flow, systems logics, costs of lowering constraints” (162). Thus, the Harawaian cyborg translates the modern concepts of ‘eugenics’ and ‘perfection’ to the concepts of ‘population control’ and ‘optimization’ (161).  While the terms ‘optimal’ and ‘population control’ lack the totalizing ideological overtones of a “master race” or the “feeble minded,” such categories force the choice of what sorts of people there should be, fragmented or not, and therefore what sorts of people there should not be.

Paralleling Hannah Arendt’s account of the banal holocaust logistician Adolf Eichmann, I argue that cyborg eugenics arise indirectly from the non-reflective fixation of the cyborg on optimizing technical problems. The Harawaian cyborg thus resists forms of eugenics rooted in claims of nature, telos or purity, but is seemingly unaware of the dark eugenic possibilities latent in the language of instrumentalization and optimization.

 It was a very interesting presentation, that provided a lot to think about in terms of the role of eugenics as modern technology evolves and becomes incorporated in the human, and the role of eugenics in posthuman literature.

A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to Continue reading

One Child, Three Biological Parents – End of Diseases?

Last week, The Telegraph announced that within three years, it will be possible to have three biological parents for any one embryo using in-vitro fertilization.  Why would anyone pursue such a technique?  To “eradicate hereditary disease.”  You can read the full artcle below:

http://www.telegraph.co.uk/science/science-news/9025121/Babies-with-three-parents-possible-within-three-years.html

This controversial method proposes that transferring a tiny fraction of DNA from a different donor than only the parents will result in a child without mitochondria-related diseases.  (Mitochondrial diseases are often severe and incurable, including muscular dystrophy and ataxia).  Researchers believe they can wipe out such diseases within a generation.  Children would also retain DNA from both their mother and their father.  The genetic implant of a third person is described as being “as minimal as changing the batteries in a camera.”

Researchers are also placing great emphasis on needing public support, before current laws (which would prevent such an operation) become changed.  Strong opposition comes from “groups who oppose embryo research and claim genetic engineering can result in serious defects.”

What is perhaps equally interesting to the article itself is the poll available on the website.  The Telegraph asks: Continue reading

Talking to the Absent?

Dr. Adrian M. Owen, a British neuroscientist currently working at the University of Western Ontario, recently presented his research at the University of Alberta.  The research team at UWO, led by Damian Cruse and Adrian M. Owen, claims to have found a way to test for consciousness in patients utterly unresponsive.  Using an fMRI scan to take images of patients’ brains while asking them to imagine certain things (either playing tennis or walking through a house) as a means of responding “yes” or “no” to questions, revealed, according to Dr. Owen, that at least 20% of patients labelled as being in vegetative states are in fact conscious (at least some of the time), but merely unable to communicate with the outside world that they in fact are conscious.  Because the mental states associated with playing tennis are consistently and ubiquitously correlated with a distinctly different part of the brain than mental states associated with spatial location, the UWO team deemed the “tennis-playing” and “house-walking” thoughts to be perfectly suited to code for such distinct responses as affirming or negating something.

The problem with assessing whether or not someone is conscious is that short of asking, all we have at our disposal is diagnoses made based on behavioural outputs (one such output being an affirmative verbal response to the question “are you conscious?”).  However, assessing the level of consciousness of a patient incapable of outward communication of any sort becomes quite difficult.  According to Dr. Owen, 20% of patients previously labelled as being in vegetative states showed signs of consciousness precisely because, thanks to the fMIR scans and the questioning techniques used by the UWO team, they were able to acknowledge their awareness by correctly responding to questions about their personal lives (i.e. questions regarding the names of a parent, the location of their last vacation prior to the accident, etc.).

Such a breakthrough, according to Dr. Owen, could potentially help clinicians make more accurate diagnoses (he cited a current 45% occurrence of misdiagnosis of patients with severe brain damage) and, perhaps even more importantly, it could help shape policies regarding the passive euthanasia of patients like Terri Schiavo.  Here is a New York Times article directly related to Dr. Owen’s research.

There are several questions, in light of Dr. Owen’s research, that come to mind: Is there a problem with passive euthanasia if a patient like Terri could have been asked?  Was there a problem with it (in the case of Terri) regardless of such a possibility?  What if once assessed as conscious and subsequently asked, a patient expressed a wish to be euthanised, but not passively euthanised because of the long and cruel nature of death by starvation and dehydration?  If 20% of patients in Dr. Owen’s study showed signs of consciousness, could there be more?  What should we make of the moral status of individuals who’s mental lives weave in and out of consciousness or consist of some very faint traces of consciousness?  What “amount” of identifiable signs of consciousness is enough?  Is it appropriate at all that consciousness is, as it seems to have become, the moral threshold between life and death?  There are many interesting questions that emerge from this issue more generally as well as the research at UWO more specifically.  For now, as I continue to digest Dr. Owen’s talk, I just pose some of these questions in their raw and unpolished forms, hopefully to get some insightful comments, concerns, other questions, etc., which will certainly aid in my thinking through such issues.

Conference Call for Papers: Human & Machine: Posthumanism in Technology, Culture, and the Arts

This might be of interest to some people:

The Ewha Trans-Humanities Research Team will host an international
conference on “Human & Machine: Posthumanism in Technology, Culture
and the Arts” from June 1st to 2nd, 2012 and invites suitable
contributions for presentation at the conference..

Genetic engineering and digital technology are more than just
supplement of human intellectual and physical ability; they seem to
bring fundamental changes to the nature of what it means to be human.
Such changes have been seen in how philosophy, literature, art,
technology and cultural discourse view the issue of individual and
group identities, the nature of human characteristics, the meaning of
life, the status of humans in nature and other relevant issues taken
from ethical and political perspectives. In this conference, the
subject of humans and technology, both of which are represented in the
debate on posthumanism, will be deeply discussed from a
multidisciplinary perspective focusing on the topics of: Human Body
Transformation in Science, Technology, and Art; Ethical Issues on
Human Enhancement; Representations of Posthumans in Popular Culture;
and Posthumanistic Impact on Human Ontology.

The conference poses the question as to whether or not technology has
influenced the perspective of being human and the nature of humanity
itself. The conference examine the aspects of the human body that have
been transformed through technology and their significance: How have
physical transformations through prostheses, implants, genetic
engineering, and organ transplants influenced human identity? How are
the ethical issues, that such transformations generate, demonstrated
in the arts? Given the phenomenon that human beings can reconstruct
themselves with machines as well as utilize machines, what is the
meaning of post-human embedded within the interaction between
human-like robots and human beings, or the combination of technology
and human-beings? These questions are to be discussed in the
conference.

Human enhancement and transformation technology, which cutting edge
technology will make possible, demand our serious consideration since
the diverse aspects of being human in the future rely on a variety of
ethical and political issues including the rationality and validity of
the application of such technologies. The conference endeavors to find
answers to the fundamental questions of how to define what is the norm
in the nature of being human, and what natural rights for human beings
are, followed by which values are to be respected in the era of
cutting edge technology.

Furthermore, the conference examines aspects of representations of
posthumans like human clones, androids, cyborgs and aliens which
depict new forms of human beings, through the image of the future
presented in popular culture such as SF movies, animations, SF novels,
music videos and TV commercials. And also, there will be a discussion
of public awareness on the notions of naturalness, otherness, class,
utopia and dystopia related with such popular culture.
As human beings attain the ability and skill to reconstruct their
bodies through substitution, the boundaries between the human body and
its image, the lines between what is artificial and what is natural,
and the distinctions between nature and culture disappear. This
phenomenon raises various ontological issues regarding the
relationships of the real body and the virtual body, life and
lifelessness, and the subject and its surroundings or ‘others’.
Posthumanism pursues, on one hand, a liberal and post-ideological
relativism, but on the other hand, it tends to combine with the
critical theories, materialism and feminism. How can individual
transhumans and posthumans be positioned in social systems and
relations? Indeed, do human beings have the freedom to choose a body
for themselves? If so, how and where can we apply our enhanced
abilities? To what extent can it be considered an individual matter or
a social and political matter? Through posing the issues and problems
on modern anthropocentricism, this conference reconsiders the human
ontology that is constantly changing and being reconstructed rather
than the one that is defined by identity in the nature of
transcendental property.

A tentative schedule of the conference is as follows:

June 1st
Session 1: Human Body Transformation in Science, Technology, and Art
Session 2: Ethical Issues on Human Enhancement
Roundtable Discussions: all speakers and discussants will participate in

June 2nd
Session 3: Representations of Posthumans in Popular Culture
Session 4: Posthumanistic Impact on Human Ontology
Roundtable Discussions: all speakers and discussants will participate in

Confirmed Speakers include Julian Savulescu (Oxford University), Dónal
O’Mathúna (Dublin City University), Michael Hauskeller (University of
Exeter), Thomas Philbeck (NYIT), Stefan Sorgner (Universität
Erlangen-Nürnberg),  and Jens Eder (Johannes Gutenberg University,
Mainz).

If you like to present a paper at the conference, please submit an
abstract of not more than 400 words by 29 February 2012 to Dr.
Eunryung Kim, e-mail: elysak@ewha.ac.kr.

Our Post-Human Futures Conference

Living Archives team member, Gregor Wolbring, will be speaking on the body and prosthetics at the “Frontiers in Research: Our Post-Human Futures” conference at the University of Ottawa on November 15, 2011.

The University of Ottawa is pleased to present the thirteenth annual Frontiers in Research lectures. This year’s theme is Our Post-Human Future .

During the past decade, human perfection and even immortality have become topics of renewed interest due to groundbreaking scientific advancements, and are now much more tangible and potentially achievable goals. The quest for human improvement through biomedical means appears to be unstoppable in the developed world. But this drive towards the “post-human” has also given rise to discussion, debate, conflict and a great deal of research on where to take the human species.

Frontiers in Research: Our Post-Human Future will explore these questions in light of developments in the fields of genetics, neuroscience and prosthetics, and their social, political, economic, ethical and religious implications.

For more information on the conference, click here.

FIXED: a Kickstarter plea

Aimee Mullins' Legs

Some of Aimee Mullins' legs

Oakland-based filmmaker Regan Brashear is launching her film FIXED: The Science / Fiction of Human Enhancement and is running a Kickstarter campaign to help with funding for the film’s clean-up.  You can start with donations of $1 and up–details about the campaign and film here.  The campaign runs until 9.03am EDT, August 31, so donate NOW.  A brief excerpt from the site:

What’s the film about?  What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Continue reading

50 Excellent Ethics Blogs Every Science Stdent Should Read

The What Sorts Blog has been added to the list of 50 excellent ethics blog as number 38.  I do not think these are in any chronological order, but my opinion might differ if the What Sorts blogwas number  4.  Check out this site at: http://www.mastersdegree.net/blog/2010/50-excellent-ethics-blogs-every-science-student-should-read/ Continue reading

Federal Government Plans to Waste More Money Trying to Evade its Responsibilities

As some of you will recall, Moyra Lang posted on a federal court decision that required the government to make its websites accessible to blind internet users.

The government has now announced plans to appeal that decision.

Continue reading