Rob Sparrow: talks on eugenics TODAY in Edmonton

Just a quick reminder:

Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) Continue reading

“Baby M”, End of Life Policy, and the Stollery Children’s Hospital

Some of you may be aware of the matter of “Baby M”, involving a 2-year-old child who was admitted to the Stollery Children’s Hospital in Edmonton, Alberta, on May 25, 2012. She required a ventilator for life support. Despite the parents’ opposition to the withdrawal of life-sustaining treatment, which incorporated their religious beliefs, the Court of Queen’s Bench found that it was in the child’s best interests to terminate life support and, on September 14, 2012, ordered the withdrawal of the ventilator. The Court held that there is a general notion in society that a life dependent upon machines and without awareness is not in the best interests of any patient. On September 19, 2012, a three member panel of the Court of Appeal held that there was no error in principle in the Queen’s Bench decision and the appeal was dismissed. On September 20, 2012, the Supreme Court of Canada dismissed the parents’ application for a further stay. “Baby M’s” ventilator was removed, she suffocated, and died.

 
The parents are appealing to the Supreme Court of Canada to have Canada’s highest court decide important issues regarding termination of life-sustaining medical treatment. This decision of the lower courts and, if leave is granted, the ultimate decision of the Supreme Court of Canada will decide the process that will be used and who will make decisions to terminate life support.

These decisions of the Alberta Courts and how they will be followed in the future may ultimately affect individuals in your organization or your community. Should you believe that you, your organization, or community have a position on these life and death issues that should be heard and considered Continue reading

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

Ethicist gets hate mail

A Melbourne academic has triggered an ethical storm by suggesting it is acceptable to kill newborns in so-called after-birth abortions if parents do not want them.

Ethicist Francesca Minerva said yesterday that she had received hate mail since a provocative article she co-wrote with Dr Alberto Giubilini appeared online.

They argued after-birth abortion should be allowed in cases when abortion would be permitted, including if a child had a defect such as Down syndrome.

Even in cases where the baby was born perfectly healthy, parents should have the right to end the life of the child if their own wellbeing was at risk.

The researchers said a newborn baby and a foetus were “morally equivalent” and both were “potential people”.

“If criteria such as the social, psychological and economic costs for potential parents are good enough reasons for having an abortion even when the foetus is healthy…then the same reasons which justify abortion should also justify the killing of the potential person when it is as the stage of a newborn, they said.

Adopting out an unwanted baby was not necessarily a solution because the mother might suffer psychological distress from giving up her child for adoption.

Dr Minerva said the article was not intended for public debate but rather for discussion among bioethicists.

“This debate has been going on for 30 years,” she said.

The BMJ Group said the researchers had been subjected to personal abuse, including threats to their lives.

It said the concept of infanticide was not new and the researchers had made an argument that deserved to be heard without receiving hostile abuse.
Catholic Respect Life executive officer Bronia Karniewicz said the argument that killing a healthy baby rather than putting them up for adoption because it might better benefit the parents was disturbing.

the article can be found here: http://au.news.yahoo.com/thewest/a/-/wa/13056055/ethicist-gets-hate-mail/

Australian paper says Euthanizing Babies should be allowed

A paper published in the Journal of Medical Ethics argues that abortion should be extended to make the killing of newborn babies permissible, even if the baby is perfectly healthy, in a shocking example of how the medical establishment is still dominated by a vicious mindset.

The paper is authored by Alberto Giubilini of Monash University in Melbourne and Francesca Minerva at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne.

The authors argue that “both fetuses and newborns do not have the same moral status as actual persons,” and that because abortion is allowed even when there is no problem with the fetus’ health, “killing a newborn should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.”

The complete article can be found here:http://www.eutimes.net/2012/03/australian-paper-says-euthanizing-babies-should-be-allowed-as-abortion/

Too dumb to be a mum?

Many stories like this (this one from the Mirror; h/t Velvet Martin) out there.  Does anyone know the legislative basis for these interventions in the UK?  One prong in many pieces of eugenics legislation was “incapable of parenting”–the other was “prospect of transmission of mental defectiveness”.  So this makes you wonder how far we are from that eugenic past.

On Mother’s Day.. the heart warming story of a girl who had to fight for the right to bring up her own child

Kerry McDougall with son Ben (pic: John Power)

Strolling along the beach, her young son in her arms, Kerry McDougall prepares for the perfect Mother’s Day – one that last year she could only dream of.

For 12 months ago tiny Ben was in care and Kerry’s life was in tatters – after social workers deemed her both too stupid to look after her son AND not even bright enough to wed her fiancé Mark.

Ben was just three days old when social workers marched into the maternity ward where Kerry was breastfeeding and took him away.

It was the start of a long, heartbreaking battle to become a proper family.

Read more: http://www.mirror.co.uk/life-style/real-life/2011/04/03/they-told-me-i-was-too-dumb-to-be-a-mum-but-i-proved-them-wrong-115875-23035451/#ixzz1It5O27Rg

Court Rules Blind Father Cannot Take Son to Disneyland

In this Global story from last September, the reporter describes a court decision to refuse to allow Karim Lakhani to bring his son to Disneyland.

With a love of travelling, Lakhani’s dream has been to take his son to Disneyland. In June, a family court judge agreed Lakhani could take his son on the trip. But there was a condition – one that Lakhani was unaware of.

At the time, two adult family friends, who live in California, were going to meet with Lakhani and his son at Disneyland. However, these friends have since changed their plans, prompting Lakhani’s ex-wife to go back to court. She says Lakhani cannot properly protect their son at the amusement park without his sight.

This is the first time his blindness has been an issue when caring for their son.

The judge ruled that Lakhani can only take his son to Disneyland if someone of sight accompanied him.

Continue reading

Health Ethics Seminar on November 19, 2010

For your information.


Ethical Challenges at the Beginning of Life: 3 Recent Cases Involving Newborns with Serious Genetic Disorders

Anna C. Zadunayski, LLB
Clinical Ethicist
Alberta Children’s Hospital
Alberta Health Services
Calgary & South Zone
Friday, 19 November 2010 12:00—12:45pm
Room 2-07 Heritage Medical Research Centre
Available via Telehealth by contacting 780-492-6676 or dossetor.centre@ualberta.ca or your local provider at least 2 business days prior to the event
For more information, please call 780-492-6676 or visit
www.ualberta.ca/BIOETHICS/
Abstract follows

CBC News – Edmonton – Alberta’s sex sterilizations re-examined

from CBC Edmonton, last night, with stacks of comments already.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined.

‘Newgenics’ still rampant in Alberta, conference told

Front page, Edmonton Journal, by Andrea Sands:

 

‘Newgenics’ still rampant in Alberta, conference told.

Health Ethics Seminar: Howard Nye on Psychological Continuity and Neonatal Medicine

The following seminar announcement may be of interest to many What Sorts readers.  You can find the abstract for the presentation below.

JOHN DOSSETOR HEALTH ETHICS CENTRE

HEALTH ETHICS SEMINAR

The Bearing of Psychological Continuity on Fetal and Neonatal Medicine

Presented by

Howard Nye, PhD

Assistant Professor, Department of Philosophy

Faculty of Arts, University of Alberta

Friday, 24 September 2010

12:00-12:45pm

Room 2-07 Heritage Medical Research Centre

(link to map:

http://www.campusmap.ualberta.ca/index.cfm?campus=1&sector=5&feature=66)

EVERYONE WELCOME!

For more information please e-mail: dossetor.centre@ualberta.ca

Abstract

Continue reading

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was. Continue reading

LifeSiteNews on Baby Isaiah, Katya Sansalone, and Annie Farlow

This up yesterday at LifesiteNews.com:

EDMONTON, Alberta, January 20, 2010 (LifeSiteNews.com) – While Isaac and Rebecka May, the Canadian couple who are fighting for their new-born baby’s life, are awaiting a January 27th judgment on their petition for a 90-day injunction against their hospital’s order to remove their baby Isaiah’s ventilator, some advocates for the disabled are saying that what the May’s are experiencing is shockingly common in Canada. According to Sam Sansalone, father of Katya Sansalone, who was born 8 years ago with full trisomy 13, in Canada “profoundly disabled kids are routinely – and intentionally – not treated with life-saving intervention.” Sansalone serves as co-chair of the Advisory Committee of Family to Family Connections at the Alberta Children’s Hospital, a family-centered care initiative recently launched in Southern Alberta.

He said that “the dynamic that we had to fight became very quickly and firmly entrenched as soon as we had a genetic diagnosis.” “The clear mandate, at least at that time, was that you don’t save these disabled children’s lives,” he continued. “You allow them to die – even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote-unquote normal children.” Katya Sansalone was born with a cardiac condition that is associated with her chromosomal defect. The Sansalones fought hard with their hospital, the Hospital for Sick Children in Toronto, to have them perform the cardiac surgery that Katya needed. The hospital initially refused to do the surgery, he said, but “they didn’t make it look that way.” “Initially they said we had a choice, and then they proceeded with trying to influence that choice by giving us false information about the range of outcomes,” he continued.

Sansalone attributed their success in part to the fact that his wife is a doctor, which helped the family to research Katya’s condition. This research allowed them to be “not so easily fooled by this kind of misinformation.” Sansalone said the hospital “actually tried to hide medical literature from me.” He saw that on one occasion the neonatologist had a key study on a clipboard that actually dispelled myths about Katya’s condition that the hospital had perpetuated, but the doctor held the study out as though it supported their position. “When I tried to read it, the neonatologist doctor actually pulled it away from my view,” he said.

Sansalone believes their experience might have some parallels to what the Mays are now going through with the Stollery Children’s Hospital. “I hear that they were being denied … regular access to the patient chart – reading it and seeing the imaging.” “That is completely illegal, … read the full story at LifeSiteNews.

For the Love of Annie

There’s a recent interview with Barb Farlow up at Bloom–Parenting Kids with Disabilities–by Louise Kinross. It starts with the following background information:

When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”

Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.

To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.

Dr. Norman Fost’s latest comments on surrogacy

Dr. Norman Fost, who wrote two papers on the Ashley case and growth attenuation with Dr. Diekema this year, says on surrogacy in an article below, “It’s paternalistic to tell a competent woman how she can use her body, whether it’s to work in a coal mine or as a surrogate mother. “ He also says, “It’s not clear why that (commodification) would even be of any great consequences to the child if he or she is raised in a loving home.”

http://www.thedailypage.com/isthmus/article.php?article=27617

His comments on other issues such as savior sibling, steroid in sport are listed here. Continue reading

Bankruptcy for Justice?

Barb and Tim Farlow elected to have a malpractice suit against a Toronto hospital heard in small claims court, but a judge has ruled the venue is inappropriate. (Photo by Tim Fraser, National Post Files)

On Monday, November 30th the National Post (a Canadian national newspaper) posted an update on their previous coverage of the Farlow court case. Those of you who are regular readers will recall that the Farlows have made serious allegations against Sick Kids Hospital in Toronto. These allegations amount to the claim that doctors at Sick Kids deliberately killed their baby, Annie, in 2005 because she had a fatal genetic abnormality. The decision handed down from Judge Herman amounted to a claim that small claims court was no place for the kinds of charges that the Farlow’s were raising: Continue reading

DisRespect interviews with Barb Farlow, Sam Sansalone

I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.

Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem

**********

Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

  1. Go to the CFMU website (http://cfmu.msumcmaster.ca/) Continue reading

Royal Society of Canada Expert Panel on End of Life Decision Making

The following expert panel has just been announced. Given that Bill C-384, legalizing euthanasia and assisted suicide in Canada, is scheduled to receive its second hour of debate on November 16th, and to be voted on on November 18th, the announcement of the panel is timely (even if largely ineffectual w.r.t. that debate and vote).

Text of the announcement in French and English below. It includes description of the membership of the panel, it’s terms of reference, and contact information.

RSC/SRC Expert Panel on End-of-Life Decision Making October 27, 2009

Among the many public-service roles of national academies around the world, one of the most important is the preparation of expert assessments on critical issues of public policy. The national academies in the United States are the most active in this regard, but the senior academies in other nations, notably in England, France, and other European countries, have been very active on this front for many years. Such reports are designed to be balanced, thorough, independent, free from conflict of interest, and based on a deep knowledge of all of the published research that is pertinent to the questions that have been posed. The Royal Society of Canada (RSC) also has a long record of issuing definitive reports of this kind, either on its own initiative, or in response to specific requests from governments or other parties. The project being announced today, “End-of-Life Decision Making,” is one of a new series that the Society has commissioned, at its own initiative, on issues of significant public interest and importance at the present time. Announcements on the other projects will follow over the course of the coming months. The Society relies on the advice of one of its senior committees, The Committee on Expert Panels (CEP), in formulating new projects of its own and in responding to requests for panel projects from external parties. In addition, the members of the Society’s CEP are responsible for selecting the membership of panels, including the chair; overseeing the conduct of panel activities; managing the peer review of the draft final report; and assisting the panel members with any difficulties that arise during the conduct of their work. Over the course of the past year, the CEP has brought forward suggestions on a new series of expert panel reports for consideration by the Society’s governing board. The board has approved a number of these suggestions, including the project on “End-of-Life Decision Making.” The additional information, below, identifies the members of the panel who have agreed to write this report, as well as the preliminary terms of reference for this project. Questions about this project may be directed to: Continue reading

Dr. Diekema’s latest paper is AAP statement on withdrawing nutrition from children

Forgoing Medically Provided Nutrition and Hydration in Children

 Douglas S. Diekema, MD MPH, Jeffrey R. Botkin, MD, MPH Committee on Bioethics

PEDIATRICS Vol. 124 No.2 August 2009, pp. 813-822

 

An excerpt from the abstract:

The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

The Med Page Today has detailed information on this statement here. It says,

The AAP’s bioethics committee, headed by Douglas S. Diekema, MD, MPH, and Jeffrey R. Botkin, MD, developed a position statement outlining limited circumstances under which clinicians can ethically halt feeding and hydration in pediatric patients. “Medically provided fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment,” according to a statement published in the August issue of Pediatrics, the official AAP journal.

Dr. Diekema, the ethicist in charge of the Ashley case who has been trying very hard to make growth attenuation therapy into general practice,  is chair of the AAP committee on Bioethics now.

Parents in Hospital Lawsuit Offer Deal

from the National Post, by Joseph Brean, June 23rd, 2009. [NB: this doesn't fit completely with my own understanding of the case]

TORONTO – The small claims court lawsuit over the controversial 2005 death in infancy of Annie Farlow at Toronto’s Hospital for Sick Children was thrown into confusion yesterday when her parents, citing a “change of position,” dropped their opposition to a full-fledged Superior Court trial, but requested to be immune from any future order to pay the hospital’s costs, and offered to drop the case in exchange for a meeting with top hospital administrators.

Timothy Farlow told Judge Thea Herman that a number of recent events have convinced him and his wife, Barbara, that the systemic problems they believe led to Annie’s death at age three months, after complications from the genetic disorder Trisomy 13, have been largely resolved, and their goal of effecting change has been achieved.

The Farlows are suing Sick Kids and two doctors for $10,000, the maximum small claim, over alleged negligence and malpractice. Sick Kids and the two defendant doctors, pediatrician Dr. Michael Weinstein and critical care specialist Dr. Christopher Parshuram, are not seeking costs from the Farlows over their current motion to elevate the case into Superior Court. But Judge Herman said she is likely powerless to prohibit some future trial judge from ordering the Farlows to pay costs.

Read the full story here. For more on the broader context of the story, see the Justice for Annie Facebook group or search the What Sorts Blog.