Scope of Eugenics – Call for Submission – extended until March 1, 2015

The Scope of Eugenics
Call for Submissions

Eugenics Archives (eugenicsarchive.ca) is pleased to announce a four-day workshop at the Banff Centre, May 22nd-25th, 2015, in Banff, Alberta. To acknowledge the significant contributions made by students to the Living Archives on Eugenics in Western Canada project over the past four years, we invite submissions from early career scholars—students and those within three years of completing their doctorates—from any discipline on topics related to eugenics and its contemporary significance.

Submissions should consist of a single document that includes a (i) summary abstract (<150 words), (ii) longer description (<750 words) outlining the presentation and explaining the relevance of the topic to eugenics, (iii) short biographical statement (<100 words), and (iv) CV. Possible topics include, but are in no way restricted to, the following :

Apologies to eugenics survivors Child welfare
Collective memory Human diversity
Nationalism Quality of life
Queer sexuality Roma peoples
Schizophrenia World Health Organization
Whiteness Particular Countries / Geographic Regions

The project director is happy to provide feedback to potential participants on these and other suggestions (e.g., on particular countries or regions of the world). Participants are expected to attend the whole workshop and to contribute a short article to eugenicsarchive.ca, ideally based on their presentation, within one month of the workshop. Articles accessible via the Encyc or Around the World modules at the site indicate the type of article we have in mind.

Accommodation and meals for all workshop participants will be covered by Eugenics Archives. Participants will also be notified upon acceptance if we are able to cover in full, or contribute to in part, additional travel expenses. The workshop will allow for substantial opportunities to enjoy the Banff surrounds and will encourage networking, mentoring, and informal discussion between junior scholars interested in eugenics and Eugenics Archives team members.

Scope of Eugenics Poster with Mountains
Deadline for submissions : February 15th, 2015 EXTENDED to March 1, 2015 Acceptances : March 15th, 2015

Questions and submissions to the project director, Professor Rob Wilson : scopeofeugenics@gmail.com

Website: https://scopeofeugenics.wordpress.com/

Hosted by the Living Archives on Eugenics in Western Canada logo1.jpg

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.

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?

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

Rebecca Dresser, UW professor and member of the growth attenuation working group, comments on the Maraachli case

Commenting on the Maraachli case where Baby Joseph was moved to U. S. after Canadian court ordered removal of his respirator, Rebecca Dresser, a professor of law and medical ethics at Washington University in St. Louis, said in the article below that U.S. courts generally side with families in such cases that want to continue treatment for loved ones even in seemingly hopeless medical cases, that similar end-of-life cases will likely become more common, “Because of the growing concerns about costs, we’re going to see more of this.”

http://www.thestar.com/news/world/article/954061–baby-joseph-moved-to-u-s-after-canadian-court-rules-docs-can-remove-breathing-tube?bn=1

Please note that Dr. Dressor is one of the members of the growth attenuation working group set up by Seattle Children’s and was quoted many times by Christine Ryan Continue reading

Questions about the growth attenuation working group article in HCR Part 2

 

The WG article explains that the group was assembled to “discuss the ethics of growth attenuation in greater depth and develop practical guidance for health professionals. “  So, it was the purpose of assembling the group to develop practical guidance for health professionals, from the beginning.

I have some questions about this.

1)    Where is the urgent need to develop any guidance for growth attenuation, which is not a therapeutic treatment? Continue reading

Questions about the growth attenuation working group article in HCR Part 1

At the beginning of the article, the authors are not very honest in what they write about the 2006 Gunther & Diekema paper.

1.    The WG article writes that Gunther & Diekema “offered an ethical justification for growth attenuation.” No they didn’t. How could they do that without giving any details of the “special” ethics committee that had reviewed the case or its discussion?

2.    According to the WG article, Gunther & Diekema cited easier care for parents as the benefit of the growth attenuation. And “the parents believed” that it would lead to increased participation to social and recreational activities for Ashley, the WG article says Gunther & Diekema wrote back in 2006. No, they didn’t. Continue reading

Family court allows parents to sterilize their severely disabled daughter in Australia

You can read the judgment here.

http://www.familycourt.gov.au/wps/wcm/resources/file/eb204741ce4e7c0/2010_FamCA_98.pdf

And here are some news articles.

http://www.brisbanetimes.com.au/queensland/parents-win-bid-to-sterilise-daughter-20100309-ptlf.html

http://mikiverse.blogspot.com/2010/03/disabled-girl-can-be-sterilised-court.html

http://www.dailymail.co.uk/news/worldnews/article-1256806/Australian-court-allows-parents-sterilise-11-year-old-daughter.html

http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/7405283/Parents-win-right-to-have-disabled-daughter-11-sterilised.html

Emi Koyama explains why she is suspicious of bioethics

Emi Koyama just posted a really great article on the Bioethics Forum site reviewing a research practice of intersex fetus treatment using a synthetic hormone and the Ashley case. She says, “I am starting to question seriously what role bioethics and bioethicists play in medical controversies involving children who cannot make decisions for themselves, and parents, especially mothers, who are forced to make the decision under complicated social, cultural and economic circumstances” and “After all, what is the relevance of risk/benefit analysis when the intended goal is unethical?”

http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4492

Emi writes toward the end of her wonderful article, “I trust many of these scholars and their judgment. But that was how I felt about the disability theorists who were part of the working group that ended up helping to polish up growth attenuation as a legitimate treatment.”

That reminds me. I have a small piece of advice for anyone who has a chance to read Dr. Adrienne Asch’s commentary to the Diekema & Fost AJOB article. Please don’t miss the footnote on Page 46. Dr. Asch is a member of the Seattle Growth Attenuation and Ethics Working Group and signed the group’s statement that claimed growth attenuation to be ethically admissible for severely disabled children in general without court orders, something Dr. Wilfond called “a compromise” the group had reached. But Dr. Asch explains in the footnote that she signed it because she “supported the process through which the statement was produced” and not because she supported all its conclusion. But normally, signing a document means that you support its contents including the conclusion, whatever process there was in its production. And whatever excuse you might have. This footnote leaves me really curious about what happened in the working group discussions.

On some misinformation in Dr. Lantos’ marvelous commentary to the Diekema & Fost article

I just read “It’s Not the Growth Attenuation. It’s the Sterilization!” , Dr. Lantos’ commentary to the AJOB article “Ashley Revisited” by Dr. Diekema and Dr. Fost. Dr. Lantos virtually pointed out the fact that the doctors’ justification has been full of deceptions. It’s the fact that I have been documenting in my blog and I’m so glad that someone officially wrote in an academic journal about “the bizarre opaqueness” of their supposedly scientific articles. Here,  I just want to point out two pieces of misinformation I found in his commentary. I think at least one of them leads us to a serious question surrounding the 2007 agreement between the hospital and WPAS. Continue reading

Dr. Diekema is going to speak about the Ashley case again in April

Dr. Diekema is among the plenary speakers in the following pediatric ethics conference in Cleveland.  He is going to speak about the Ashley case  in one of the breakout sessions on April 22. “Ethics Concults and Institutional Interests: The Ashley Case.” He will also speak in another breakout session on the next day about withholding and withdrawing fluids and nutrition.

the Pediatric Ethics 2010:Advancing the Interests of Children

April 22-24, 2010

You will find the program details here.

Heidi Janz Wins 2010 Tanis Doe Award

Heidi Janz wins Tanis Doe Award

Dr. Heidi Janz received word this morning that she has been selected by the Canadian Disability Studies Association that she has been selected as the recipient of the 2010 Tanis Doe Award for Canadian Disability Study and Culture. This annual award was first given in 2009 and honors activist and scholar Tanis Doe who died in 2004. According to the Canadian Disability Studies Association:

This award honours an individual who dares to “speak the unspeakable” in advancing the study and culture of disability, and who has enriched through research, teaching, or activism, the lives of Canadians with disabilities.

Tanis Doe, a Métis (Ojibway/French Canadian) Deaf woman, who was a wheelchair user in the later part of her short life, received her Doctoral Degree from the University of Alberta, before going on to hold the Ed Roberts Post-Doctoral Resreach fellowship at the University of California- Berkeley, being appointed a Fullbright Scholar in Bioethics at the University of Washington, and teaching at several other universities, including her final post at the University of Victoria. Continue reading

Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does. Continue reading

“‘The Ashley Treatment’ is against physicians’ moral duty to themselves,” says Naomi Tan

In the November issue of the Journal of Medical Ethics, there’s a great paper on the Ashley case by Naomi Tan of Center for Social Ethics and Policy, University of Manchester and I. Brassington. It is titled “Agency, duties and the ‘Ashley Treatment.’”

http://jme.bmj.com/content/35/11/658.abstract

 Reading its full text, I find it reassuring that the authors, unlike some others who have written papers on the case, have obviously read pertaining documents very rigorously and have steadfast understanding of the facts. After describing the case and pointing out some ethical problems in the justifying rationale by Ashley’s father and the doctors, that are not very different from those already pointed out, the authors proceed to a philosophical discussion.

If we call creatures with autonomy and personhood “agent” for the sake of ease, and think that Ashley is a “non-agent,” would it justify the invasive treatments done to her? The authors give two different arguments to conclude that it wouldn’t. Continue reading

The 6th Pediatric Bioethics Conference of Seattle Children’s on ethical issues in prenatal and neonatal care in July 2010

Tiny Babies, Large Questions: Ethical Issues in Prenatal and Neonatal Care

 Sixth Annual Pediatric Bioethics Conference Friday and Saturday, July 23, 24, 2010

 Bell Harbor International Conference Center, Seattle, Washington

http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/

Dr. Norman Fost, who coauthored the Ashley paper with Dr. Diekema in AJOB this April, will be one of the speakers as usual. His presentation is titled, “Whatever Happened to Baby Doe? The Transformation from Under-treatment to Over-treatment.”

Advice to a Young Bioethicist

Bioethics Baby

The following is the beginning of a response delivered by distinguished bioethicist Arthur Caplan to Ezekiel Emanuel’s address to the American Society for Bioethics and Humanities earlier this year. The full speech was posted by Linda MacDonald Glenn at the Women’s Bioethics Project blog about a month ago.

The issue: what kind of training do bioethicists need? More descriptively (if awkwardly): what is it important for the people providing advice on life and death decisions to parents, children (of aged parents), doctors, hospitals, and others involved in health care, to know?

What Sorts readers might also be especially interested in checking out Emanuel’s views of the legalization of euthanasia, and might recall the misrepresentation of those views in the recent discussions of Death Panels in the US.  Anyway, here’s Caplan’s speech, which provides much food for thought: Continue reading

Reading “Ashley Revisited: A Response to the Critics” by Dr. Dikema and Dr. Fost

Reading the article “Ashley Revisited: A Response to the Critics” written by Dr. Diekema and Dr. Fost and published in AJOB in April, I find same dishonesties repeated from the initial 2006 paper by Dr. Gunther and Dr. Diekema. I also find new pieces of information revealed for the first time and newly altered explanation. But it is quite interesting that the new information and explanation do not always coincide with their previous explanations and as a result, rather seem to have ended up in betraying or confirming their deception after all.

(I pointed out some of the mysteries and questions about the initial 2006 paper here by the way. )

1.  reasons and motivations

The authors are extremely dishonest again in explaining the parents’ motivations and the priorities among them. As I have already pointed out here, Ashley’s father repeatedly denied prolonging home care as any part of the reasons for growth attenuation. The parents did not have any “fear” that it would be impossible for them to care their daughter at home as she grew bigger. Continue reading