Brittany Maynard, the 29-year-old woman whose YouTube video announcing that she would choose to die on November 1 under Oregon’s Death with Dignity Act, died on November 1. It became one of the major news stories of the week before it was buried by the torrent of news about the US mid-term elections.
Ms Maynard had a compelling story. She was a young, attractive, recently married woman dreaming of a family when she learned that she had an aggressive brain tumour. Rather than burden her husband and mother and suffer the indignities of increasing dependency, she moved to Oregon where she could access legal assisted suicide.
She also contacted the assisted suicide lobby group Compassion & Choices and offered to promote its cause. Its video about her notched up 10 million hits in a month. In it she said that she would probably take her life on Saturday, November 1.
However, there was a last-minute hitch. On October 29, she said in a new video that "it doesn't seem like the right time right now" and she might not carry through with her November 1 resolution.
But on November 3 Compassion & Choices announced on Facebook that she had indeed died on Saturday, as she said. According to the celebrity magazine People, which was the source of much of the news about her, her last Facebook post was a bittersweet farewell:
"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!"
The news provoked a torrent of commentary on her decision, both for and against. It has clearly been a public relations triumph for the assisted suicide movement, drowning out opposing voices from other people with the kind of same brain tumour.
The British Parliament will begin debating whether to legalise a controversial technique known to opponents as “3-parent embryos” or “3-parent babies” or, to its supporters as “mitochondrial transfer”. A prominent government advisor, Professor Robin Lovell-Badge, of the National Institute for Medical Research, summed up the view of the scientific establishment in New Scientist recently: “It is our considered view that the techniques are not unsafe and are likely to be effective.”
The prospect of creating embryos with genetic material from three persons has become an international issue. A prominent American stem cell scientist, Paul Knoepfler, of the University of California Davis School of Medicine, recently published an open letter in his blog questioning the wisdom of the move. He emphasises that he is not “a radical extremist or luddite”; he does embryonic stem cell research and supports IVF for infertile couples.
Here are some paragraphs:
This experimental technology has a noble goal, but in my opinion there are too many unanswered questions and risks that remain to allow it to proceed at this time. In fact, I believe that moving forward with it would most likely be a tragic mistake for the UK…
There are numerous serious risks associated with this technology. These include most notably the possibility that developmentally disabled or deceased babies will be produced. As an objective scientist, I believe the odds of this happening are at least equal to the chance that this technology will succeed in preventing mitochondrial disorders. In fact, there are precedents that would suggest that negative outcomes are reasonably likely.
In the 1990s, fertility clinics in the US, China, and elsewhere performed human reproductive procedures similar to what is being proposed now [2-6]. While the goal in those experiments was to simply create babies for infertile couples and not specifically to deal with mitochondrial disorders, the technologies employed are largely alike. In fact, these 1990s procedures were far simpler and less invasive (they only involved transfer of some oocyte cytoplasm) than what is being proposed now with mitochondrial therapies where an entire nucleus or set of chromatin is moved from one cell to another, where an entire nucleus has also been removed.
The end result from these human reproductive experiments in the 1990s was a mixture of outcomes including not only seemingly healthy children (thank goodness), but also miscarriages, a child with severe developmental disability, and chromosomal aberrations. These are very real, concerning possible outcomes for the proposed human mitochondrial transfer technology today and in the future should it be allowed to proceed…
… the proponents claim incorrectly that “mitochondrial donation” is not human genetic modification. It is in fact genetic modification. Notably, the first team to ever make this kind of technology work unambiguously stated in their paper that it was genetic modification: ““This report is the first case of human germline genetic modification resulting in normal healthy children.”
The proponents of 3-parent technology also incorrectly claim that the concerns about it or risks associated with it are just hypothetical, although in reality the concerns based on past experiences discussed earlier are quite concrete and real.
Proponents also might be overly optimistic about the chances that the technology will frequently prevent mitochondrial disorders in humans.
A scientific reality often passed over in this discussion is that while mitochondria have been studied for decades, the field of studying the mitochondrial genome is in its infancy and is far too new to support a major human intervention that involves the mitochondrial genome. The interactions between the mitochondrial genome and the nuclear genome are also only poorly understood today. It would be rash and premature to proceed with human mitochondrial transfer now given how primitive our knowledge is in this area at this time.
There is no more powerful argument for legal abortion than the fear that many more women will die if they are forced to resort to underground abortion mills. However, the experience of Chile, where abortion is illegal for any reason, even rape or incest, suggests that this doesn’t necessarily happen.
From a statistical point of view, Chile is a natural experiment because abortion was legal there from 1931 to 1989, when it was banned by one of the world’s most restrictive laws.
Proof of whether abortion-related mortality rises or falls when abortion is banned is a bit more complicated than it might seem. In World Health Organisation statistics, “illegal abortions” only represent a fraction of “all abortions”, because these also include spontaneous abortion or ectopic pregnancies.
According to official data, hospital discharges due to complications of abortions suspected to be illegally induced have been dropping at a rate of 2% per year since 2001. There was no decrease in hospital discharges due to other types of abortion, such as spontaneous abortion or ectopic pregnancies. The high quality of Chilean vital statistics, says Elard, means these findings are unlikely to be the result of an artefact of the registry system. Rather, a decrease in hospital discharges due to complications from illegal abortion appears to explain virtually all the reduction in hospital discharges due to any type of abortion in Chile during the last decade.
The Chilean experience represents a paradox in our times, he contends: even under a restrictive abortion law, maternal health indicators can be significantly improved by other factors, including a noteworthy reduction in mortality and morbidity associated to abortion.
A Belgian psychiatrist who sexually abused a patient who subsequently sought euthanasia has been deregistered. Walter Vandereycken’s offences surfaced in 2012 when Ann G, a woman with anorexia nervosa, accused him on Terzake, a well-known current affairs program. He was suspended from his position as a professor at the Catholic University of Leuven (KULeuven), but continued in private practice. Now he has been suspended for life from the medical profession. (See original report in BioEdge.)
Vandereycken, who is now 65, was no ordinary psychiatrist. Apart from being a sexologist, he was an international expert on anorexia (with a textbook published in English). Apparently he had been abusing patients for years; colleagues suspected, but no one blew the whistle.
When Ann G appeared on Terzake, she had apparently already requested euthanasia. Going public gave her a brief respite from "the cancer in her head". However, she was bitterly disappointed that the man who had victimised her had not been severely disciplined. Then, overseen by a kindly new psychiatrist, she exercised her option. Oddly enough, none of the newspaper reports mentioned her death.
After hibernating for 60 years, eugenics is making a comeback, both in academic and popular spheres. Nazi enthusiasm for eugenics, as well as sterilisation campaigns throughout the Western world in the 1920s and 1930s, gave eugenics a bad name. However, In the Huffington Post recently, Joe Entine of the Genetic Literacy Project made the case for Eugenics 2.0:
“Modern eugenic aspirations are not about the draconian top-down measures promoted by the Nazis and their ilk. Instead of being driven by a desire to "improve" the species, new eugenics is driven by our personal desire to be as healthy, intelligent and fit as possible--and for the opportunity of our children to be so as well. And that's not something that should be restricted lightly.”
Entine argues that we should legalise screening technologies, as most people want them and they are ultimately of great social and economic benefit to society. He tries to draw a distinction between the new eugenics and “old fears” generated by a far darker, more aggressive eugenics: “Critics solely on negative eugenics and not the positive impact that family planning and genetic screening have already had on society.”
And he suggests that a Gattaca-style world where social success depends on genetic endowment is science fiction scaremongering that will never come about: “It may sound like a real argument but it's sci-fi in the extreme.”
With many of its headlines reading as if they had been written by moonlighting editors from The Onion, the Huffington Post is obviously not a peer-reviewed journal.
However, eugenics is also being touted in the peer-reviewed journals as well. The latest addition to a burgeoning literature, from an rising Oxford philosophy student, Benjamin Meir Jacobs, arguing in the Journal of Medical Ethics that parents have an “obligation to choose a healthier child” based on a moral imperative to avoid creating situations of “harm”. Jacobs argues that we are morally obliged to select children without disabilities if we have such a choice (which is now available through preimplantation genetic diagnosis and IVF).
A tragic case in England has highlighted the contested status of unborn children. A municipal council in the north-west of the country is seeking funds to cover the medical costs of a 6-year-old girl affected by foetal alcohol syndrome. The girl’s mother drank half a bottle of vodka and eight cans of strong lager a day during her pregnancy even though social workers warned her that this might harm the child.
Now the council wants the girl to be awarded criminal injuries compensation for “growth retardation”. It describes the mother’s action as a "crime of violence" against her unborn child.
In the High Court, the council’s barrister said that the mother had poisoned her child: “It’s not disputed that the mother administered a noxious thing, it could be described as a destructive thing, to her daughter and it inflicted grievous bodily harm on her. The child was born with foetal alcohol spectrum disorder … We say it’s on all fours with manslaughter.”
The council has already failed in an attempt to win compensation on the child's behalf from the Criminal Injuries Compensation Authority.
The mother had been drinking heavily and consuming drugs, including cannabis, LSD and amphetamines, from her early teens. When she fell pregnant, she stopped taking drugs, but continued drinking.
However tragic the case may seem, abortion lobbyists feel that no compensation should be paid. If excessive drinking is criminalised, other behaviour by pregnant women could be. Ann Furedi, of the British Pregnancy Advisory Service, and Rebecca Schiller, of Birthrights, said: "Making one particular form of behaviour during pregnancy into a criminal offence would lay the ground for criminalising a wide range of other behaviours because they may too pose a risk to the health of the baby."
In similar cases in the United States, mothers have ended up in jail. The High Court has still not handed down its judgement.
Did Brittany Maynard die freely and without coercion of any kind? This is the question that must be asked after this attractive 29-year-old woman with a brain tumour announced earlier in the week that she would probably postpone the assisted suicide she had planned for Saturday, November 1.
"I still feel good enough, and I still have enough joy — and I still laugh and smile with my friends and my family enough — that it doesn't seem like the right time right now," she said in a YouTube video.
Sometime, yes, but not as scheduled.
Early in October Brittany had appeared in a YouTube video in which she announced that she would take advantage of Oregon’s Death with Dignity Act. She would end her life with a lethal dose of barbiturates which had been prescribed by her doctor. It was a stunning piece of cinematography and in the last month more than 10 million people have viewed it.
Her last-minute decision to postpone her death must have been a bitter pill for Compassion & Choices, America’s best-known assisted suicide lobby group. It had had used Brittany as a poster girl in its campaign for legalisation.
The superbly crafted video which launched “the Brittany Maynard Fund” was directed by Dustin Hoffman’s daughter Allie, a well-known Hollywood figure who runs a New York public relations firm. She put together a multi-platform media campaign called Twenty Nine Years. A professional story-telling consultant was employed to create the video. The celebrity magazines, the glossy women’s magazines and the major newspapers were provided with photos and interviews. She was interviewed on national television. C&C had a lot riding on the Brittany Maynard story.
Many of C&C’s directors and advisors are well-known Americans, including Ram Dass, a drug-tripping Harvard psychology professor turned spiritual guru; Olympia Dukakis, the Oscar-winning actress; and Judith Krantz, the romance novelist.
But they are nearly all in their 60s, 70s and 80s. Here was a winsome and articulate woman in her 20s, a woman who had attracted international media attention by setting a firm date for her assisted suicide, a woman who was a shining icon of everything they were fighting for.
And then she told the whole world that she had stepped back from the cliff’s edge. Even the timing was terrible from a public relations point of view. After all, in less than three weeks she would celebrate her 30th birthday. Her media value would depreciate overnight.
And then, quite unexpectedly, came good news, a C&C Facebook post on Monday: “We're sad to announce the passing of a dear and wonderful woman, Brittany Maynard. She passed peacefully in her bed surrounded by close family and loved ones.” She had died on Saturday, on schedule.
This could be the opening for a Kay Scarpetta novel. Woman says she will die; woman says she won’t die; woman dies.
How can anyone now be sure that Brittany died freely? What was going on behind the scenes? Did she die surrounded by friends who were sobbing or by friends looking at their watches? How can anyone be sure that intense moral pressure was not placed on Brittany not to break her word and not to disappoint those wonderful people who had made her famous?
We can be reasonably confident that everything about Brittany’s death was aboveboard. C&C plays by the book, unlike some other assisted suicide groups in the US.
But one of the problems with assisted suicide is that the principal witness is no longer with us. We can be reasonably confident -- but we can never be certain.
An American nurse recently returned from Liberia has defied government quarantine measures. Thirty-three-year-old nurse Kaci Hickox refused to abide by voluntary isolation guidelines provided by authorities in Maine, venturing out of her house two days in a row, the second time to take a bike-ride with her boyfriend. A judge has ruled in her favour. Governor Paul LePage was upset. "As governor, I have done everything I can to protect the health and safety of Mainers," he said. "The judge has eased restrictions with this ruling and I believe it is unfortunate. However, the state will abide by law."
Hickox says US quarantine requirements are “inhumane” and unreasonable. She tested negative to Ebola on Saturday, and has exhibited no symptoms of the disease.
There is a clear division between politicians and medicos on the issue of quarantine. Maine Governor Paul Le Page and New Jersey Governor Chris Christie, say the state must be “vigilant” to protect its citizens. "I was ready and willing — and remain ready and willing — to reasonably address the needs of health care workers meeting guidelines to assure the public health is protected," said Le Page.
“Quarantine is a very intrusive tool in fighting disease. Our legal system permits it, but only when there are no other less restrictive ways to control an outbreak. There are less restrictive ways to contain Ebola, for example, self-monitoring and voluntary isolation at home. Those things work. The only people in America who got Ebola are health care workers who cared for Ebola patients. And to date, all but one who have been treated in America have survived. Ebola is not the lethal disease in the U.S. that it is in Sierra Leone, Guinea and Liberia, making quarantine even harder to justify.
“The way to manage Ebola is with strict monitoring for symptoms. The way to manage fear and ignorance is with quarantine. The way to defeat Ebola in West Africa is to treat volunteers as responsible, moral heroes. The way to allow the epidemic to spread is to lock-up those who offer the only chance for treatment and eradication.”
In any case, the epidemic seems to be subsiding in Liberia, the worst-hit country in West Africa, although the experts insist that the epidemic is still extremely dangerous.
Volunteers! Volunteers!World Bank president Jim Yong Kim has appealed for thousands of volunteer medical workers to fight the epidemic in West Africa. Many were too frightened, he said. "Right now, I'm very much worried about where we will find those healthcare workers. With the fear factor going out of control in so many places, I hope healthcare professionals will understand that when they took their oath to become a health care worker it was precisely for moments like this," he added.
Do doctors have a duty to help? Yes, because medicine is a vocation, says Professor Stephen G. Post, of Stony Brook University School of Medicine. “So do professionals have a duty to treat Ebola patients? I say yes for physicians and nurses who are infectious disease specialists so long as they have ample experience. They accepted their duty when they chose their specialty,
Patient privacy. Ethically and legally information about patients’ health care information is supposed to be kept confidential. The Ebola epidemic is testing this, with patients’ names, photographs, diagnosis and family details being broadcast in government press releases and the media. “Ebola hysteria raises questions not only about how to contain the disease, but also to what extent Americans value their healthcare privacy. What liberties are Americans willing to sacrifice to calm their fears? How to balance the concern for public welfare with legal and ethical privacy principles?” writes Michele Goodwin in Harvard Law School’s Bill of Health blog.
Unbalanced reporting. “Why does the US media obsess over public health matters that pose modest risk here, yet ignore much greater risks?” asks Kayhan Parsi, of the Neiswanger Institute for Bioethics in Chicago, at the Bioethics.net blog. “We engage in this almost ritualistic media dance every few years when a potentially harmful, even lethal, contagion is constantly reported by the media.” In an interview in Science Belgian microbiologist Peter Piot, who helped to identify the Ebola virus in 1976 was scathing. “I've often said that journalists can save more lives than doctors, by giving the right information. But when I see that media reports are more about the dog of the nurse than about Ebola itself, that tells a story.”
The US Department of Homeland Security may have opened the door for American surrogate mothers to ‘sell’ citizenship to parents from foreign countries.
The transmission of citizenship from mother to child was until recently restricted to genetic parents alone, under the Immigration and Nationality Act. But a new immigration policy statement broadens the definition of ‘mother’ and ‘parent’ to include gestational mothers as well. One now only need only be a surrogate mother and legal parent at the time of birth to pass on citizenship.
“A woman who is a U.S. citizen can be hired by a reproductive medical clinic to become pregnant overseas and to give birth in China, Saudi Arabia, or anywhere else, and then effectively hand a U.S. passport to the baby.”
But it seems the amendments could inadvertently have negative consequences as well. Smith continues: “the contracts will just provide that the waiver of parenthood occur after birth, and voila, instant citizenship. For sale. Unbelievable.”