A new American documentary examines the ethical issues surrounding human enhancement for people with disabilities. The documentary, FIXED, contains interviews with a range of physically impaired people, as well as specialists in bioehancement. It presents an exciting picture of technological advance, while at the same time giving voice to scepticism and concerns. Overall the documentary presents the bioehancement project in a favorable light. Some may disagree with its conclusions, but it is a resource for understanding the ethical issues surrounding emerging enhancement technologies.
Recent experiments with growing chimerical organs in animals have delivered favourable results. Japanese researchers recently managed to grow different nascent rat organs in mice using pluripotent stem cells. Researchers believe it could soon be used to grow human organs.
Amidst the enthusiasm of the scientific community, four bioethicsts from the Universities of Maastricht and Basel have explored the bioethical complexities of the matter. In a Journal of Medical Ethics article released this week, they consider whether the process is comparable to the creation of complete human/non-human chimeras. There has been significant moral debate over the latter, and similar arguments could be used against the former. As the authors state,
“Injecting human PSCs into animal embryos could theoretically risk the resulting animal itself developing human physical or mental features such as human limb development or neuronal development.”
Ultimately, they claim, such concerns are unfounded. There is a morally relevant difference between a mere organ and a chimera that has "human neuronal (or reproductive)" capacities:
“In the absence of any adverse consequences, objections based on human dignity are deprived of most of their force.”
There are also attendant concerns about the possibility of zoonosis, the interspecific transmission of viral or bacterial disease. Whilst certain aspects of the proposed procedure minimise this risk, there is nevertheless still some risk.
“A deadly zoonosis could theoretically kill millions of people, and one might question whether the benefits of creating a new source of organs is worth outweighing the potential harms flowing from even a small risk of zoonosis.”
In their conclusion, the authors assert: “More research is required in order to clarify several uncertainties about viability and safety, and several concerns remain regarding the human features problem, animal welfare and human dignity.”
The overall tenor of the article is nevertheless quite positive. As Dr. David Shaw stated in a recent blog post, "While this source of organs is not entirely without risks, we believe that they are worth taking."
The reader’s daughter is a busy professional who has battled depression for some time. The reader asks Barbieri about the potential impact of her daughter’s decision, considering the various psychological factors at play.
In a direct reference to woman’s depression, Barbieri wonders whether her mental state is a motivating factor for considering IVF. Trivially, Barbieri remarks: “depending on the cause of the depression, having a baby could have an impact on your daughter’s mental health.” In rather non-committal response, Barbieri comments: “Some decisions have no right or wrong answer and take a lot of working out. This is one such”.
Barbieri’s response is in stark contrast to the strong opinions expressed by some fertility experts. In a recent blog post Rachel Gurevich, an author who has written multiple award-winning books on fertility, answers the question, ‘will pregnancy cure depression?’. Gurevich comments: “this isn't always the case. In fact, those who have experienced infertility are more likely to feel depression during pregnancy and are at an increased risk for postpartum depression.”
This week’s mid-term elections in the United States were a resounding victory for the Republican Party. It controls the Senate for the first time since 2006 and increased its majority in the House of Representatives. Less dramatic and less reported was the effect of the election on the controversial issue of abortion.
In Colorado and North Dakota, abortion opponents supported personhood amendments to the state constitution. These would have defined a foetus as a person and therefore a human being entitled to constitutional right, above all the right to life. Colorado’s amendment would have included the unborn under the definition of “person” and “child” in the state’s criminal code. North Dakota would have conferred an “inalienable right to life” at every stage of human development. But in Colorado the amendment sank by a margin of 65 to 35, and in North Dakota by 64 to 36.
“The personhood movement has fought honorably and maintained the standard of the sanctity of life, but it is time to switch up the strategy,” says one of the strategists of the personhood movement, Gualberto Garcia Jones.
However, the tactic of pushing “personhood” was controversial even within the pro-life movement. Incremental legislative change combined with the growing pro-life sentiment among younger voters may prove to be a more workable strategy. The battle over abortion rights in the US is far from over.
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.