Has the stem cell jinx struck again? A world-famous Italian researcher has been accused of failing to obtain ethical approval for operations and misleading medical journals about the success of his research. Paolo Macchiarini, an Italian with a global reputation for building new windpipes with scaffolding constructed with stem cells, appears to be facing serious allegations.
“Since the accusations against Dr Macchiarini are serious and detailed, I considered that they should be thoroughly investigated,” said Anders Hamsten, vice chancellor of Sweden’s famous Karolinska Institute.
Dr Macchiarini denies the allegations. “We have never ever manipulated data,” he told the New York Times, nor did he ignore regulations about informed consent. ,
Dr Macciarini is a colourful character whose experimental windpipe operations have been on the front page of major newspapers around the world over the past few years. “I'm like a wild animal that does not need to be in a cage, I need to express my convictions that I can help a patient with innovative things,” he told The Lancet.
Dr Macciarini has operated on at least three patients and replaced their windpipe with a structure made of stem cells. However, it appears that none of the operations was subjected to an ethical review. In one case a patient signed a consent form, but two weeks after the surgery.
Politicians from a minor nationalist party, the Liberal Democratic Party of Russia, want the government to file fingerprints and DNA profiles of every Russian citizen. While the proposal appears to have little chance of success, it does suggest that some law-makers lack sensitivity about issues of genetic privacy.
According to the bill’s sponsor, Roman Khudyakov, the information would be stored safely in a special agency of the Interior Minister or the FSB (the successor to the KGB). He told the popular daily Izvestia that the information could be stored on citizens’ ID cards. He dismissed concerns about the safety of their personal data.
“All information will be protected. It is like a bank card. We will also toughen the criminal responsibility for officials who have access to the data. When people face three years in prison for leaking the data no one would be tempted to do this.”
The data would be stored for 150 years after the date of collection, and then destroyed.
Under Mr Khudyakov’s proposal, registration would be voluntary for ordinary citizens, who would have to pay a fee for the privilege of allowing the state to know everything about their genetic information. But it would be both free and compulsory for all civil servants, law enforcers, military and security personnel, convicts, firemen, rescuers and applicants for a driving license or gun permit. Which, of course, captures just about everyone.
Mr Khudyakov has also proposed universal fingerprinting of all travellers, both foreign and Russian, and all people with dangerous diseases, especially AIDS.
More evidence that articles about genetic determinism are positively correlated with provocative headlines.
In the Daily Mail, the article was headed, “Were you BORN to be single? Scientists discover a gene that makes certain people bad at relationships”; in the Mirror, “'It's not you, it's my DNA': Are you destined to be alone forever as Singleton gene discovered?”; and in the relatively sober Guardian, ‘Happy gene’ may increase chances of romantic relationships”.
The headlines were summing up a study from Peking University, in Beijing, in the journal Scientific Reports. Researchers found that a single gene, 5-HTA1, which affects levels of the mood hormone, serotonin, “was significantly associated with the odds of being single both before and after controlling for socioeconomic status, external appearance, religious beliefs, parenting style, and depressive symptoms”.
Fifty percent of university students who had two copies of the C variant of the gene were likely to be in relationships, but only 40% of students with the G variant.
But after the large numbers came the small details. The study admitted that the genetic component explained only 1.4% of the difference in the probability of being single or in a relationship. Furthermore, the researchers only interviewed Han Chinese university students. Results with blue-collar workers or with different ethnic backgrounds might produce different results.
If the procedures are approved, they would be binding on hospitals and doctors throughout the country.
Spurring on this study is the feeling among transplant surgeons that healthy organs are sometimes wasted when patients are euthanased. In the words of a medical ethics expert with the Royal Dutch Medical Association, Gert van Dijk, “An estimated 5 to 10% of people who are euthanased could be considered for organ donation. Five percent does not seem like much, but this still means 250 to 500 potential organ donors every year.” He believes that Dutch doctors could even double the number of organs available for life-saving procedures. It could also give donors the consolation of knowing that they are saving lives even if they themselves have to die.
Up to now, there have only been six case of organ donation after euthanasia in the Netherlands. More have been done in neighbouring Belgium, where euthanasia is also legal.
While getting euthanasia patients to donate organs might sound easy, in practice there are a number of difficulties. Most euthanasia patients have cancer and so their organs are not suitable for donation. The most suitable patients are those with neurodegenerative diseases like ALS or multiple sclerosis.
There are administrative issues as well. Most hospitals are adverse to allowing doctors to perform euthanasia if they are not staff members. Many euthanasia patients want to die at home, but if they want to donate their organs, they have to die in an operating theatre, away from their loved ones.
The protocol will probably create some firm guidelines:
Procedures for euthanasia and organ donation must be completely separate. Only if a person fulfils all the criteria for euthanasia would he be eligible for organ donation.
The idea of donating organs must come from the patient, not the doctor.
Only a doctor who is not involved in the organ donation can confirm the patient’s eligibility for euthanasia.
The euthanasia doctor must sign a statement indemnifying the hospital against future lawsuits.
Some admire futurists for their audacity; others mock them for their frequent and spectacular inaccuracy. The latest predictions of futurist-cum-transhumanist Gray Scott in are certainly daring. But are they accurate?
According to Scott, Human ectogenesis – the growth of an embryo or fetus outside of the human womb – will be possible by 2033. “The debate over ectogenesis”, says Scott, “will heat up around 2020, once scientists are allowed to birth the first full term mammal inside an artificial uterus.” Scott refers to the research of Juntendo University academic Yoshinori Kuwabara, who with his research team has managed to keep goat fetuses growing for ten days.
Scott also claims that ‘age reversal’ in humans will be possible by 2025:
“For the wealthy, reversing age will be common by 2025. It may be extraordinarily expensive and risky, but for people who want to turn back the clock, it will be worth it.”
Scott wrests support for his predication in a recent article on age reversal published in the journal Cell. The study, completed by a group of US and Australian researchers, discusses the successful reversal of ageing in the muscle tissue of mice.
In a more general prediction, Scott claims that transhumanists will outnumber Christians by the year 2035. For this prediction he utilizes a rather controversial definition of a transhumanist – someone with any bio-upgrade or human enhancement (including anyone who has undergone the banal medical process of hip-replacement or dental implants).
Will all or some or none of these predictions come true? Retrofuturist scholars make light of the myriad of failed predictions from the past, but they also note that a number of extremely precise and supposedly ‘crazy’ predictions have come true. Time will tell where these transhumanist visions fall.
Concerning the nature of time, Augustine famously wrote:
“What, then, is time? If no one ask of me, I know; if I wish to explain to him who asks, I know not.” (Confessions, Bk XI, ch.XIV).
A recent article on personhood by bioethics writer Virginia Hughes discusses an analogous definition of personhood. Hughes draws upon the work of academics Martha Farah and Andrea Heberlein, who in 2007 argued that personhood “is a concept that everyone feels they understand but no one can satisfactorily define”.
Hughes surveys the ‘hard science’ of personhood. Much of recent neuroscientific research attempts to explain our intuitions about the ‘personhood’ through reference to features of the brain that structure our experience of the world. It’s a kind of curious hybrid of materialism and Kantianism.
Hughes discusses a number of neuroscientific discoveries in the past century. Structures like the fusiform face area and the superior temporal sulcus are activated when we are looking at faces or moving bodies. We also can’t help but anthropomorphise inaniminate structures when they display animate characteristics (consider the ‘bullying triangle’ from a famous 1940’s experiment). In addition, babies are able to process facial expressions at an extremely early stage, despite their scant real world experience. All this seems to suggest that personhood, rather than having some objective existence in the world, is a direct product of neurophysiological phenomena in the human brain.
However, even with all the scientific evidence describing the neurophysiological substrate of the concept ‘personhood’, there seems to be something left unexplained. As Farah and Heberlein note, science has been able to offer an objective definition of plants – organisms that get their energy through photosynthesis – but it hasn’t be able to do the same for the category of personhood.
Some might pounce on the claim and use it to justify a bioethical human exceptionalism. Others may argue the opposite. If personhood is a flaky, undefinable concept, it loses its moral force in bioethical debates.
Whilst not directly engaging in this debate, Hughes suggests that personhood is the categorical foundation of human social life:
“Here’s why I think the personhood notion so valuable. We are people. Our people-centric minds evolved for a reason (namely, our species depends on social interactions) and our people-centric minds dictate how our society works. So maybe personhood is not based in reality. It’s the crux of our reality.”
There are a number of assumptions here, some more controversial than others. Whilst Hughes provides a useful summary of the topic, the need for extended scholarly treatment of the topic is evident.
In a recent article in The Conversation, Two academics at Emory University in Georgia have proposed a novel solution to problem of providing healthcare for the burgeoning elderly population in Western nations.
Rather than merely advocating an increase in the number of geriatricians, Dr. Jonathan Flacker and Rebecca Dillard argue for “new models of care” that focus on “better coordination of care for older adults”.
“If we want care for older adults that is more than just “good enough,” we need more boots on the ground to provide that care. We don’t just need more geriatricians. We need more pharmacists, nurses, nurse practitioners and physician assistants trained in the special needs of the older patient.”
As an example the authors discuss Acute Care for the Elderly (ACE) units – teams of nurses and nurse practitioners, physicians, social workers and other health-care professionals. They use coordinated care principles to ensure better patient outcomes with a relatively small investment of geriatrician time.
They also refer to the Nurses Improving Care for Healthsystem Elders (NICHE) program, an initiative designed to help nurses stimulate culture change and make healthcare systems more senior friendly.
“In each case, the geriatrician’s expertise is amplified throughout health-care organizations through care systems, better use of resources, technology, financial incentives and teamwork.”
The authors acknowledge that there is also a need for new geriatricians. But too often is this put forward as the only solution:
“What older adults need in order to optimize function and quality of life transcends simply the medical issues and extends to policies and infrastructure of our health-care systems and communities.”
About 70 people accompanied Belgian euthanasia doctor Wim Distelmans on his tour of Auschwitz, the Nazi extermination camp in German-occupied Poland, last month. The German magazine Der Spiegel ran a long, reflective feature which attempted to explain why he dared to link euthanasia to Nazi atrocities .
The tour was highly controversial. In Antwerp ultraorthodox Jews were outraged that Dr Distelmans had described Auschwitz as “an inspiring venue”. They called him “a professional killer”. The deputy director of the Auschwitz memorial commented: "We feel that the attempt to link the history of Auschwitz with the current debate about euthanasia is inappropriate."
Distelmans was not deterred by the protests. His point was that the Nazis violated autonomy while he esteems it. He is killing patients out of humility and love. "What does this mean to us?", Distelmans asked the tour group.
"Many of us are doctors. We have power over other people. We know everything better. We were taught to preserve life. But we have to make sure that we do not continue to treat our patients, against their wills, when they actually want to die. Nobody should assume that they have the power to judge what a life is worth. We must become the servants of our patients, and when it comes to the end, we have to accept our failure as physicians."
A doctor on the tour shared an interesting case. One of his patients is an unrepentant former member of the Waffen SS who had hung a picture of Hitler over his bed. He is paralysed on one side and now be wants to be euthanased. He refused because he felt that the patient did not deserve a gentle, painless death. Another said that he would refuse because “If I killed him, I would feel like a murderer."
And Distelmans? He told Der Spiegel that he would perform the euthanasia out of respect for the man's pain and humanity and as an act of unconditional love.
Assisted suicide is an idea which keeps evolving. Who could have foreseen the development of groups of non-doctors which help hundreds of people to die in Switzerland? Now a bioethicist from the University of Tübingen in Germany has proposed what he calls “commercially assisted suicide” (CAS) – paying a non-doctor to kill patients.
Roland Kipke argues in the journal Bioethics that there are no ethical arguments against CAS which cannot also be deployed against physician-assisted suicide (as in Oregon). It is not a popular cause, as the thought of CAS horrifies both supporters and opponents of assisted suicide.
Kipke rolls out several arguments in favour of CAS. It is not a breach of medical ethics because no doctor is involved. A for-profit provider will be more readily available than a doctor, who may have qualms of conscience.
He takes a very sceptical view of the competence of doctors. A commercial provider may not be skilled at detecting depression, but neither are doctors:
“The most common psychiatric disorder, and, at the same time, the disease that is most commonly associated with suicidal intentions, is depression. Several studies clearly show that a large number of physicians fail to recognize the depressive disorders of their patients. This is particularly remarkable because people with depression account for about 10% of a GP's patients…. Therefore, it is not justified to say that doctors are in general particularly able to assess the conditions for an autonomous decision for suicide.”
Nor are doctors particularly competent at prescribing adequate doses of drugs to commit suicide.
“a doctor does not normally learn (in education and medical practice) how many grams of sodium pentobarbital cause a quick death. Above all, the necessary knowledge about the correct dosage is limited and can easily be acquired by non-physicians.”
Kipke feels that patients would have more autonomy in making their final decision if they use a commercial provider.
“Studies have shown that doctors' assessment of the quality of life and of the suicidal wishes of seriously ill patients depends significantly on the psychological situation of the doctors themselves, and that they systematically underestimate the quality of life of their patients. Quite a few doctors also advocate directive counselling, even on morally controversial issues. It is probable that this is not fundamentally different with regard to their decisions for or against suicide.”
Finally, would CAS be another step forward in the insidious commercialisation of human life? No, says Kipke. “Doctors always earn their living from the needs of their patients: no one takes offence.” Why not a commercial provider?
The situation of civilians under siege by the Assad regime in Syria is even worse than under ISIS, the Islamic extremists, say Syrian doctors. In an op-ed in the New York Times, two doctors claim that at least 560 doctors and nurses have been killed and 155 medical facilities have been attacked since the war began.
Much of the destruction is due to barrel bombs, 44-gallon drums filled with explosives and shrapnel launched from helicopters. “The bombs explode with terrific force and breadth, amputating limbs and driving shrapnel throughout the body. One doctor we interviewed was still horrified by the indelible image of a mother and daughter whose bodies were blown apart while their hands remained clasped together.”
The doctors, Leonard S. Rubenstein, of Johns Hopkins University, and M. Zaher Sahloul, president of the Syrian American Medical Society, claim that the regime’s military is deliberately targeting clinics, field hospitals and ambulances. “When work in a field hospital becomes like death, it is difficult to imagine how life has any chance at all,” they write.
They have called upon the Obama administration to set up humanitarian buffer zones in northern and southern Syria so that civilians can be cared for.
Their words are echoed by a Syrian doctor writing on the blog Syria Deeply:
“We are doctors. We live to help and heal people – not to watch them die. Every one of us living in opposition-held territory of Syria has made a conscious decision: despite all the risks, we will stay and treat whoever needs us… As bombers tear across the sky on their way to dropping their deadly cargo, I wish that the urgency that moved the U.S. and other governments to bomb ISIS was matched by an urgency to save the lives of civilians. Please do not wait until there is no one left to save.”