Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures.

Saving Down syndrome

A New Zealand Initiative

Saving Down syndrome.

 

CALL FOR PAPERS for the International Journal of Disability, Community & Rehabilitation (IJDCR): What Sorts of People Should There Be?

CALL FOR PAPERS

                                      for the International Journal of Disability, Community & Rehabilitation (IJDCR)

What Sorts of People Should There Be?

 Guest Editor

Gregor Wolbring, Community Rehabilitation and Disability Studies, Dept. of Community Health Sciences, University of Calgary 

 

 

 

Throughout history, people with non-normative abilities have been judged. Sometimes this judgment led to positive consequences, however for the most part these non-normative abilities were judged negatively and the carriers of such non-normative abilities experienced disabling treatment.   This very judgment (ableism) and its disabling consequences is one of the main areas of scholarly work within the realm of disability studies. Eugenics, the practice of finding ways to better heritable abilities of humans, is one dynamic that influences the judgment of people’s abilities and the disabling consequences and vice versa.

 

What sorts of people should there be is a question that has been asked and answered in different ways throughout human history, is still a question asked and answered today and will be with us also for some time in the future. 

 

Advances in science and technology will allow new judgments and actions linked to the sentiment around the question of what sorts of people there should be. 

 

In partnership with the SSHRC-CURA-funded project “Living Archives on Eugenics in Western Canada” (eugenicsarchive.ca), the Editors of IJDCR would like to devote a special issue on this topic. 

We invite potential contributors, regardless of fields of study (discipline), to submit 250-word abstracts that articulate the conceptual arguments and knowledge base to be covered in a critical analysis on various aspects from history to future of “What sorts of people should there be”.

 

Please submit abstracts to the Guest Editor via e-mail at gwolbrin[at]ucalgary.ca  by 15 July, 2012

 

From selected abstracts, we will request full articles of 3000-5000 words (excluding figures and tables) of original research and scholarship on a range of topics to be submitted to the editor by 15 October 2012. Note that an invitation to submit an article does not guarantee its publication.

 

Every submitted article will be subject to blind peer review and recommendations arising.

 

As to possible areas linked to the theme the below is a sample list of possible topics

 

• What sorts of people should be born
• What sorts of people should live
• What sorts of people should be citizens
• What sorts of people should compete
• What sorts of people….

 

We invite authors to investigate the history, contemporary use and potential future exhibition of the relationships between the core question “What sorts of people should there be” and such issues as:

 

• disabled people and what it means to be ‘disabled’,
• the community around them
• practitioners, consumers and researchers linked to the disability discourse
• community rehabilitation and the rehabilitation field in general
• inclusive education and the education of disabled people in general
• the future of education
• employability of disabled people
• citizenship of disabled people
• global citizenship
• body image of disabled people
• medical and social health policies and their impact on disabled people
•  health care for disabled people
• elderly people, youthism and ageism
• disabled people in low income countries
• laws and international conventions related to disabled people such as the UN      Convention on the rights of persons with disabilities
• the concept of personhood
• concept of health and health care
• the measure of disability adjusted life years and other measurements used to guide health care dollar allocation
• quality of life assessment
• history
• future
• science and technology governance
• science and technology assessment
• ethics
• enhancement

 For more information about the International Journal of Disability, Community & Rehabilitation (IJDCR) please go to http://www.ijdcr.ca.

 

International Journal of Disability, Community & Rehabilitation

www.ijdcr.ca

ISSN 1703-3381

 

 

Cheers

Gregor

Dr Gregor Wolbring

Associate Professor, University of Calgary,

Faculty of Medicine,

Dept. of Community Health Sciences, Specialization Community Rehabilitation and Disability Studies, 

3330 Hospital Drive NW, T2N4N1, Calgary, Alberta , Canada

Email: gwolbrin[at]ucalgary.ca

Phone 1-403-210-7083

Web: http://www.crds.org/research/faculty/Gregor_Wolbring.shtml

 

 

“physically incapacitated” or “mentally defective” don’t make me choose!

Our eugenics history is not a thing of the past.

In our provinical election many  Albertans in wheelchairs can not get into their polling stations to cast their vote.

The Living Archives on Eugenics in Western Canada calls upon Elections Alberta, elected officals and Canadians to make changes to policy and the Elections Act to stop excluding and creating barriers for persons with disabilities.

Albertans with disabilities, particularly those in wheelchairs, are unable to cast their ballots at several polling stations in Alberta on Election Day. The Elections Alberta website provides voter information about where to vote, but when some Albertans sought information about their polling stations they discovered that they could not get access to voting stations. Voters in wheelchairs throughout our province are unable to participate at the polls due to the lack of accessible polling stations. Elections Alberta Operations Director, Drew Westwater explains that while advanced polling stations were wheelchair accessible, the polling stations selected for Election Day, April 23, are not.

Alberta voters can find out about their polling stations using the Elections Alberta website, as one Edmonton woman did: “I happened to check on Voter link to find out where I can vote. The website happily told me the poll station address, and furthermore informed me that it is not wheelchair accessible. That was it. No link. No instructions. No clue that I could still possibly cast a ballot in this election. After four phone calls and almost two weeks, I finally was able to find out about, and negotiate a way to vote, by mail-in ballot”

The Elections Act 88.1 (96) Voter Assistance section, informs voters that they can vote using a mail in ballot – A wheelchair athlete in Edmonton requested a mail in ballot and discovered “I received this ballot today, and in order to vote, I actually have to self-identify, by check mark, as “physically incapacitated”…. have we really come that far from “mentally defective” (the term used to differentiate, institutionalize and sterilize thousands of Albertans from 1929 – 1972 under the Alberta Sexual Sterilization Act)?”

Alberta’s eugenic history influences our attitudes towards individuals with disabilities and differences, as our electoral process demonstrates. People with disabilities and vulnerable Albertans are being treated in exclusionary ways. The wheelchair athlete who is trying to participate explains: “… in order for my vote to count. I need to plan 2 weeks ahead. Navigate an unclear and difficult to manoeuvre electoral system. And self-identify with words that lack any dignity… words and ideas that I have spent my adult life fighting against. And this extra electoral burden is put upon the time and bodies of folks who are already forced to spend more energy and time to navigate other inaccessible and disabling structures.”

The effects of our eugenics past are present in our contemporary attitudes towards individuals with disabilities and the language that is required. The extra electoral burden placed upon individuals who are already forced to spend more time and energy to navigate so many other inaccessible and disabling structures such as housing, public spaces, transportation issues and more, is unacceptable.

As Mr Westwater said, the advanced polling stations throughout Alberta are wheelchair accessible but he could not explain why ALL polling stations are not accessible. Who else is excluded from our electoral process? How can our provincial government continue to exclude Albertans in our electoral process? Why do elected officials insist upon using language that treats its citizens without respect and dignity?

Instead of placing the burden upon those who already face multiple barriers as persons with disabilities, we need to place the responsibility upon elected officials to ensure all public spaces are accessible for all members of the public and create inclusive policies that guarantee electoral participation for all Albertans.

To find out if your polling station is accessible go to: http://wtv.elections.ab.ca/wtWhereDoIVote.cfm?MID=WH1

Write or call the candidates in your riding and after the election call again!  The fight for inclusive communities can not be left to those who already face so many barriers – all of us must work towards change!

Remember to Vote on April 23, 2012 – if you can get into your polling station

Eugenics in Toronto – Hiding Ultra-sound results

The Toronto Star recently released an article on the fact that many GTA hospitals, “particularly those in ‘ethnic’ areas [...] won’t let their ultrasound staff tell pregnant women the sex of the fetus,” in order to prevent abortion.

A study from St. Michael’s Hospital reveals that while male/female rations for first child of immigrants from India is 105/1oo, the ratio for third children of immigrants was 136/100.  Although researchers caution that their findings are not actually evidence of female feticide (indeed, they do not know why results have turned out as such) and urge people not to racially profile citizens after that, it has caused some concern in the community, and resulted in withheld ultrasounds.

http://www.thestar.com/news/article/1162357–female-feticide-is-it-happening-in-ontario?bn=1

http://www.thestar.com/news/article/1162613–six-gta-hospitals-won-t-reveal-fetal-sex-during-ultrasound?bn=1

http://www.thestar.com/opinion/editorialopinion/article/1163258–hiding-toronto-hospital-ultrasound-results-to-prevent-sex-selection-is-pointless-and-possibly-racist

Bioethicist, Tom Koch, commented on pregnant women who choose to abort a fetus with Down syndrome, “We’re engaged in eugenics.”

Dr. Phil.com Mercy or Murder

Deadly Consequences

Annette says she wants the right to euthanize her severely-disabled children, who are being kept alive only by feeding tubes. What would you do? Then, former model, Stephanie Vostry, says she’s fighting to survive chronic Lyme disease, an illness some believe she may be faking. Plus, chronic Lyme disease hits close to home for a “Dr. Phil” staff member.

Dr. Phil.com.

http://drphil.com/shows/show/1826

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&showID=1826

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&slide=1&showID=1826&preview=&versionID=

http://www.globalnews.ca/taking+mercy/6442597182/story.html

Dr Phil polls the audience

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&slide=1&showID=1826&preview=&versionID=#

Pop Culture’s 100-year Obsession With Eugenics

For the past century, pop culture has told plenty of stories about eugenics. Some of them have criticized the notion that you can make people “better” — but others have been wishful fantasies about making a better world through genetics. Here’s the weird history of eugenics in popular culture. From Pre-World War II to Genetic Engineering and Beyond, this article traces our fascination with eugenics.  This article includes a clip of a radio presentation, lists of novels and movies that highlight eugenics. Past Intern Jenney McNaughton brought this article to my attention, thanks Jenney!

Francis Fukuyama, a professor at Johns Hopkins wrote:

“The first victim of transhumanism might be equality… If we start transforming ourselves into something superior, what rights will these enhanced creatures claim, and what rights will they possess when compared to those left behind? If some move ahead, can anyone afford not to follow? These questions are troubling enough within rich, developed societies. Add in the implications for citizens of the world’s poorest countries — for whom biotechnology’s marvels likely will be out of reach — and the threat to the idea of equality becomes even more menacing.”

cool device

As a full-time wheelchair user, I am thrilled to see this stand-up mobility product where a person who is paralyzed can get around standing up. In the video you can see the person shopping, cooking, cleaning, and interacting with others from a standing position. The device is relatively narrow compared to even a small wheelchair. I would love to be able to get around upright and to interact with others at eye level without craning my neck! Standing upright and being ”tall” again is something I really miss! Here is the link:   Instead of a wheelchair

Maine law changes disparaging language in state statutes, programs

from Bangor Daily News Maine, April 9th, 2012:

Christina Mailhot got teased a lot as a child.

Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.

“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”

Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”

Read the whole article here

Offensive words and phrases and their recommended replacements:

• Afflicted (eliminate or use “affected”)
• Crippled children (children with disabilities)
• Deranged (persons who have mental health diagnoses)
• Drunkard (person with alcoholism)
• Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
• Lunatic (person declared legally incompetent)
• Mental deficiency (cognitive disability)
• Mental retardation (developmental disability)
• Mentally defective (has a cognitive disability)
• Senile (eliminate or use “people with dementia” or “people who have dementia”)

Genetic counseling for the politically committed

h/t Anne Pasek

What sorts of academics should there be?

from Carl Elliott, “How to be an academic failure: an introduction for beginners”, The Ruminator Review, but also:  whitecoatblackhat.com/academicfailure/

Carl visited us up in Edmonton a few years ago, courtesy in part due to the work he was doing at the time on big pharma and also as a member of the What Sorts Network.  In addition to enjoying and learning much from his public lecture, we also had a great informal, roundtable session with about a dozen people that was focused on his then-developing work on a particular case in psychopathology that involved a senior professor who had murdered his spouse.

I also had a fun dinner with Carl in which he confessed his slight ill-ease with me.  This was caused by the fact that every time I started speaking, I managed to disappoint his expectation that I would sound just like The Dude.  “Damn it, how can that be?” he wondered aloud, almost with sufficient pathos for me to consider peppering our conversation with some of the many lines I know from heart from The Big Lebowski.  But despite the short-term fun this would have involved, I thought that this might actually exacerbate the problem in the long run, so I resisted the temptation.  “But that’s just like, your opinion, man.” I still hear a small voice inside my head say.

Here’s how his recent article, with all its sage advice on academic failure, begins:

How to be an academic failure? Let me count the ways. You can become a disgruntled graduate student. You can become a burned-out administrator, perhaps an associate dean. You can become an aging, solitary hermit, isolated in your own department, or you can become a media pundit, sought out by reporters but laughed at by your peers. You can exploit your graduate students and make them hate you; you can alienate your colleagues and have them whisper about you behind your back; you can pick fights with university officials and blow your chances at promotion. You can become an idealistic failure at age 25, a cynical failure at 45, or an eccentric failure at 65. If failure is what you’re looking for, then you can hardly do better than the academic life. The opportunities are practically limitless.

Call me arrogant, but I like to think I have a knack for failure. Having started and abandoned one abortive career, participated in the dissolution of a major bioethics center, published dozens of articles nobody has read and given public lectures so dull that audience members were actually snoring, I think I have earned my stripes. It is true that I am not an alcoholic yet. I do not have a substance abuse problem, and no university disciplinary proceedings have been brought against me so far. I am still a novice at failure. Many other people in my own field have succeeded at failing in a far more spectacular fashion than I have, some of whom are rumored to be living in South America. But I am learning. And I think I have something to contribute.  Read more

Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes

Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article).  In such cases, CPR is not performed and after a short wait, organs are removed.  However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one.  Some hospitals wait five minutes while others only two.  The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long.  Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating.  This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.

The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss.  “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said.  Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)

Defining death is not as straight forward as it might seem.  Of course, there are certainly clear cut cases.  Taking a stroll through a cemetery reveals hundreds such cases.  However, the moment that marks the exact boundary between life and death is much harder to define.  Perhaps this is because there is no such moment, death being a process of a certain duration.  Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take.  Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?

Just because machines are doing the breathing does not mean that the person is dead.  By that definition, artificial hearts or pace makers would make the people who have them into walking corpses.  Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs.  Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition.  But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being.  We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.

This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue.  Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).

I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained.  One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons.  Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons?  Perhaps it can, but the reasons for such practices must reflect this respect and dignity.  I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.

What Sorts of People Should There Be? Do the Deceased Qualify?

When the Social Security Act was being written by Congress in 1939, no one thought that it might be possible to conceive a child posthumously.  In 2003, 18 months after the death of her husband, Karen Capato, a Florida resident, gave birth to his (her husband’s) twins (see article).  Robert, Karen’s husband, preserved his sperm in a sperm bank and gave written consent for its use by his wife before he died.

After her husband’s death, Karen applied for social security survivor benefits for the twins, but was denied because Florida laws recognize the eligibility of inheriting property only if the children who are to inherit property are named in a last will and testament.  This apparently also translates into an ineligibility of the twins to receive survivor benefits.  Robert could not have written the twins into his will because he did not know that they were going to exist at some point in the future.  Regardless of whether or not he discussed possibilities with his wife, he had no way of knowing the genders or the number of children he would father posthumously.

There is, to my mind, a question of whether Karen’s twins can really be called “survivors” since they did not literally survive their father.  And since it was Karen’s own choice to have them after her husband was already dead, perhaps counting on survivor benefits for aid was a tad premature and maybe even irresponsible.  These worries aside, however, it is interesting to live at a time when technological advances create such problems for the legal system.  After all, there is no question regarding biological parentage in this case.  Half of Robert’s DNA had been willingly transferred to a future generation.

While thinking about what sorts of people there should be, we think in terms of human variation.  However, we don’t always stop to consider why a variety of humans are “people” in the first place and what exactly makes them into “people.”  It would be difficult (and likely hopelessly so) to argue that a sperm cell is a person.  And yet, at the time of conception, that was all that remained of Robert.  I would think that it would be absurd to insist that Karen’s twins are essentially fatherless (it is true that their father is dead, but it is not the case that they have not been fathered).  It would be equally absurd to think of the doctors who prepared the fertilized egg as fathers (the medical team has no parental responsibilities toward the twins).  Although the twins were not a result of sexual intercourse between Robert and Karen, their conception is an instance of sexual reproduction (Robert’s and Karen’s genetic material is present in equal proportions in the resulting offspring).  So when asked who their parents are, the twins should refer to Robert and Karen and not just Karen or Karen and the hospital staff or even more absurdly to Karen and Robert’s sperm.  So did Robert father the twins?  I’d say he did!  If that’s the case, then does he qualify to be represented under the general question of what sorts of “people” there should be?  When we think about human variation, do the dead count?  I think they do!  If, by recognizing all kinds of people as “people,” we implicitly assume that we have duties toward them, then by making conceptual space for Robert and other deceased individuals (this also includes all of us at some point), we ought to recognize our duties toward the dead.  Perhaps that should inform the court’s decision in the case of the twins even if they are not literally “survivors.”

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.

The Unhealthy Side Effects of Mixing Medicare with Big Business

Cancer drug shortages in the United States are putting lives at risk, especially when treatments require regular dosages over extended periods of time.  Alice Park of Time Magazine writes:

In late February, when Divers called the hospital to confirm Alyssa’s upcoming chemotherapy treatment, the nurse informed her that there was a drug shortage. The hospital couldn’t be sure that there would be enough methotrexate — the cornerstone of therapy for some childhood cancers, including leukemia and osteosarcoma — to treat Alyssa, now 10. Divers was told she might have to reschedule the session; the hospital would let her know. “It made me sick to my stomach to hear that,” says Divers, a former chaplain from Palmyra, Va. “Alyssa was in treatment for over a year already, and the last thing you want to do is add unnecessary delays in treatment, which gives the cancer a chance to catch up.” Divers explains that her daughter’s cancer doubles in tumor load every 34 days, “so you need to hit it again and again to eradicate it.” (See article)

And this is just one of the many cases.  But what is causing these shortages?  Although this is not the whole story (since the big picture is a bit more complicated, including procedural issues with FDA inspections), a substantial portion of the problem is caused by the economics of drug supply.  One thread of the economic story goes something like this: in order to make chemotherapy treatments easier for patients, doctors began offering infusions in their offices rather than in hospitals.  The 2005 reimbursement scheme, however, allowed doctors to be reimbursed at a 6% profit.  The problem was that the reimbursement price lagged behind the market prices by six months, which made the reimbursements lower than what the doctors paid for the drug, essentially pushing some physicians to prescribe pricier brand name drugs.  This, in turn, amounted in lower orders of generic drugs, which further shrank the market.

“In order to gain market share, companies underbid the market to get the business, and it’s a race to the bottom,” says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “Whoever is the last company standing can’t charge enough to make a profit on the drug and to make needed investments to keep making the drug.” That’s what may have happened with the methotrexate that Alyssa Divers depends on. (See article)

To add to this incredible situation, once the drug shortages were publicized, doctors started receiving offers from distributors, with stockpiled stashes of the harder to get drugs, who were very happy to sell the medicines, charging “$800 to $900 per gram for a medication that normally costs $16” (see article).

I guess that one way to respond to this is to blame the government for its untimely reimbursement policy, which certainly makes me wonder (why is there a six month lag in the first place?).  What really puts a bad taste in my mouth, however, is how intimately the production of pharmaceuticals is linked to the administration of treatments that use certain drugs.  When a profession views itself as essentially helping humankind by caring for human well being and health and when the societal respect is accorded to this profession for such reasons, it is more than disheartening to find out how closely some such professionals can resemble mere pedlars of life when viewed in light of their business connections to pharmaceutical companies (which seem to have no moral qualms about charging 56 times the market worth of a life-saving medicine).

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

CCD Calls on Global to Stage Follow-up Episode

Recently, Dick Sobsey wrote about the Live Euthanasia Debate airing on Global Television’s 16 x 9 program.

The show, “Taking Mercy”, also featured a Live Blog including comments from several members of the What Sorts Network.

Alex Schadenberg, Executive Director with the Euthanasia Prevention Coalition, wrote a post condemning the one-sidedness of the show and comparing the “propaganda” in the 16 x 9 episode with the eugenic attitudes that led to the Nazi euthanasia program.

The Council of Canadians with Disabilities has also responded to the lack of an opposing perspective in the so called “debate”. The CCD is challenging Global to stage a follow-up episode.

We are challenging Global, in the name of journalistic balance, to stage a follow-up episode featuring persons with disabilities who want to live and who see a danger in opening up the debate on euthanasia. Only good can come from providing an opportunity for a broader, fairer public discourse.

If you agree that the perspective of those opposed to euthanasia should be represented in a follow-up episode, please take a minute to write to Global representatives at the addresses listed in CCD’s response to “Taking Mercy”.

Rick Santorum and prenatal screening

For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that,  ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.

Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.

 If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.

But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.

Visiting professor forced to leave Canada due to son having autism

The Martlet | Visiting professor forced to leave Canada.

 

The DSM Drama (“Part V”)

Dr. Stefan P. Kruszewski, in an opinion piece written for ABC News entitled “Doctors’ Conflicting Interests Can Cost Money and Lives, and Hinder Medical Discoveries,” warns against the danger of medical practitioners recommending specific drugs as part of treatment while being paid to speak, advocate, and do research for the companies that manufacture them.

After writing a letter expressing concerns about such practices to the Journal of American Medical Association, the associate editor responded (via e-mail) by shrugging such concerns off as trivial.

During the review process, an associate editor at the journal asked the question (and inadvertently copied me on an email that had been sent to another associate editor), “What’s the big deal? What’s all this [expletive deleted] about conflicts of interest?” (see link)

Kruszewski, however, thinks such practices are actually very dangerous.  He writes:

But I do worry, because drug promotion and clinical decision-making that are brokered on the backs of dollar bills have a greater chance of causing serious adverse outcomes, including illnesses and death. If a physician embellishes the effectiveness of a drug or minimizes its risk, that directly hurts you and me.  Physicians who are heavily supported by pharmaceutical companies and medical device makers are not forming independent, unbiased decisions. Instead, their brains have been lined with gifts, perks and money, which influences their rose-colored opinions. (see link)

The conflict of interest does not stop at Dr. Kruszewski’s worries and the problem he points to can unfortunately be traced to the DSM (The Diagnostic and Statistical Manual), which is an authoritative taxonomy of mental disorders.  Worries of financial conflicts plagued the fourth installment of the DSM (the DSM IV) and with the DSM V on the horizon, similar criticisms are voiced.

The manual, published by the American Psychiatric Association, details the diagnostic criteria for each and every psychiatric disorder, many of which have pharmacological treatments. After the 1994 release of DSM-4, the APA instituted a policy requiring expert advisors to disclose drug industry ties. But the move toward transparency did little to cut down on conflicts, with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4. (see link)

The greatest risk of conflict of interest remains with the taxonomizing and eventual diagnosing of disorders that are intimately linked with the manufacturing of drugs intended to treat these disorders.  Katie Moisse writes:

Some of most conflicted panels are those for which drugs represent the first line of treatment, with two-thirds of the mood disorders panel, 83 percent of the psychotic disorders panel and 100 percent of the sleep disorders panel disclosing “ties to the pharmaceutical companies that manufacture the medications used to treat these disorders or to companies that service the pharmaceutical industry,” according to the study. (see link)

This is not to suggest, of course, that medical professionals have malicious intent or that they are only interested in the health of their own bank accounts.  However, there remains a serious worry about the taxonomy itself as well as about future diagnoses and treatment.  To add to the turbulent atmosphere surrounding the DSM V, the introduction of certain new diagnoses has also been criticized.

The DSM-5 has also drawn criticism for introducing new diagnoses that some experts argue lack scientific evidence. Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry.  “They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two. Most are made by primary care doctors who see a patient for about seven minutes and write a prescription.” (see link)

I think we have a serious problem on our hands if drug companies get to determine the taxonomy of mental disorders and medical doctors diagnose and prescribe drugs in accordance with the financial interests of these drug manufacturers.  Even if things are not as bad as they sound, they seem to be getting worse (“with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4”).  Should we start going to the accountants of pharmaceutical companies for advice?  Now that would be absurd, but if pharmaceutical companies have as much sway over what is defined as a mental disorder and what treatment is pursued as Moisse suggests, then perhaps we might as well just bypass the middleman (the local mental health professional) and go directly to the source!  Why are individuals who are directly funded by drug manufacturers allowed to make executive decisions on the DSM V?  James Scully, APA director, sees no other way.

APA medical director and CEO Dr. James Scully insisted the DSM-5 development process “is the most open and transparent of any previous edition of the DSM.”  “We wanted to include a wide variety of scientists and researchers with a range of expertise and viewpoints in the DSM-5 process. Excluding everyone with direct or indirect funding from the industry would unreasonably limit the participation of leading mental health experts in the DSM-5 development process,” he said in a statement. (see link)

Lisa Cosgrove, associate professor of clinical psychology at the University of Massachusetts-Boston is of a different opinion:

Cosgrove said she believes there are plenty mental health professionals with no financial ties to drug companies. If necessary, experts with conflicts could still participate in the process as non-voting advisors, she said.  “My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised,” she said. “They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.” (see link)

I hardly think that the mental health professionals with no financial ties to drug companies live at or just above the poverty line, so why, unless a researcher is explicitly doing research for a certain pharmaceutical company, does the profession open itself to such criticisms by allowing the kinds of practices Kruszewski and Cosgrove object to?