I’m sure it’s just randomness and not something in the water, but often our newsletters seem devoted to a theme, be it euthanasia, or IVF, or stem cell research. This time, unfortunately, it’s skulduggery.
Below you can read about a Los Angeles doctor who has just been sentenced to 30 years in jail for prescribing powerful pain-killer to drug addicts, some of whom ended up dead. Then there’s another euthanasia scandal in Belgium in which a 37-year-old woman died at the hands of an incompetent doctorafter being diagnosed with autism. (Autism? Are you kidding?)
The most colourful, however, is the on-going controversy surrounding trachea surgeon Paolo Macchiarini, who made headlines for creating artificial windpipes with stem cells. It turns out that his research, his CV and his romantic life all involve a fair bit of unsubstantiated creativity. Some of his patients died, too.
No surprises here. Human nature being what it is, there are bound to be a few bad apples in the medical barrel.
But it should lead us to reflect that governments need to take the possibility of misconduct very seriously when they are crafting legislation for the new genetic technologies. An English academic recently wrote in The Guardian that “playing God with our genes … is a good thing because God, nature or whatever we want to call the agencies that have made us, often get it wrong and it’s up to us to correct those mistakes.”
But if it is people like the doctors above who are playing God, it’s very likely that they will make irreparable mistakes. If scientists want to sack God, they should think very carefully about the CVs of the persons who will be moving into his office.
The US Department of Health and Human Services has ruled that that transgender people are entitled to sex-change surgery provided under Medicare Advantage insurers. An Air Force veteran, Charlene Lauderdale, sought coverage for her transitioning surgery in November 2014 but it was denied because it was not the proper treatment for her, as she had been hospitalised four times for psychiatric problems.
It turns out that the board reached its decision in a rather unusual way. In 1981 Medicare described sex reassignment surgery as “controversial” and “experimental” and said that it should not be covered. When this was appealed in 2013, the Centers for Medicare & Medicaid Services (CMS) declined to defend the old determination. The only evidence presented to the appeals board was submitted by advocacy groups supporting the “aggrieved party”. The CMS presented not one sentence of evidence.
Our legal system is adversarial and its integrity depends on an honest clash between opposing points of view. Why did the CMS throw in the towel? Did it really believe that there is no scientific evidence whatsoever which might question the benefits of transgender surgery? It certainly exists.
Their conclusions are also quite sobering: “The prevalence of suicide attempts among respondents to the National Transgender Discrimination Survey (NTDS), conducted by the National Gay and Lesbian Task Force and National Center for Transgender Equality, is 41 percent, which vastly exceeds the 4.6 percent of the overall U.S. population who report a lifetime suicide attempt, and is also higher than the 10-20 percent of lesbian, gay and bisexual adults who report ever attempting suicide.”
Bioethics must always be based on evidence. Ignoring contrary evidence, as the HHS seems to have done, not only corrupts the legal process, it could do immense harm to vulnerable people.
The Atlantic recently published a feature about the early days of artificial reproductive technology. The headline was: “The First Artificial Insemination Was an Ethical Nightmare: The 19th-century procedure involved lies, a secrecy pledge, and sperm from a surprise donor”.
It turns out that the first pregnancy with artificial insemination (at least in the US) was in 1855 in New York but it ended in a miscarriage. The first successful pregnancy with the same method took place in Philadelphia in 1884.
The patient was a married woman whose husband was infertile because of venereal disease. Without seeking the consent of either husband or wife, the doctor anaesthetised her and inseminated her with the sperm of one of his medical students. The women never discovered the truth and the students were sworn to secrecy.
However, when her baby was a 25-year-old businessman one of the students published his recollections of the event (after contacting the child). As far as he was concerned, artificial insemination was a eugenic boon, “a race-uplifting procedure”, which would produce children of “wonderful mental endowments” instead of “half-witted, evil-inclined, disease-disposed offspring”.
The author of the article in The Atlantic was amused by the old-fashioned lies, secrecy and donor anonymity. But has any of that changed? Most children born from contemporary reproductive technologies are “genetic orphans”. Most parents shop for donors who will confer “wonderful mental endowments” upon their offspring. Plus ça change, plus c'est la même chose.
In his State of the Union address President Obama announced a cancer moonshot: an ambitious plan to cure cancer. "The same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease," he said.
Oops. He didn’t say that. Richard Nixon did in his 1971 State of the Union address. “We want to be the first generation that finally wins the war on cancer,” then-Vice President Al Gore said in 1998. “For the first time, the enemy is outmatched.”
It’s not just the politicians who know how to cure cancer. Scientists make big promises as well. In 2005 the Director at the National Cancer Institute, Andrew von Eschenbach, said “Our plan is to eliminate the suffering and death that result from this process that we understand as cancer, and we are committed to a goal of doing so as early as 2015.”
That commitment was made only ten years ago and cancer is still the second leading cause of death in the United States.
It’s great to feel optimistic, but one has the feeling that promises like these are made to distract voters from other issues. “It’s a bit utopian at this point,” agreed Barrie Bode, a professor at Northern Illinois University and a 20-year cancer researcher, told MarketWatch. “It’s like saying we need to fix the economy once and for all. Right, like that’s going to happen,” he said.
However, if you are looking for a job in cancer research, now looks like a very good time.
Happy New Year! BioEdge is gearing up for a big year, with lots of news and more interviews with bioethicists from around the world.
Animal rights is one of the areas which we cover from time to time – which explains the photo above, one which I have been dying to use. It is a famous selfie of a male crested macaque named Naruto in an Indonesian wlldlife reserve.
British nature photographer David Slater placed the camera amongst the monkeys in 2011 and Naruto pressed the trigger. Later on the image appeared on Wikipedia without Slater’s permission, but Wikipedia refused to take it down, because Naruto was the “author”, not Slater.
In September PETA (People for the Ethical Treatment of Animals) became involved. It argued in United States District Court in San Francisco that Naruto held the copyright. On his behalf PETA wanted to licence the image and use the proceeds to protect his species. Implicit in its case was the notion that animal are also persons and have legal rights.
The bemused judge, William H. Orrick, disagreed. “While Congress and the president can extend the protection of law to animals as well as humans,” he wrote, “there is no indication that they did so in the copyright act.”
This was a blow for PETA, but its attorney was philosophical. “We will continue to fight for Naruto and his fellow macaques,” said Jeff Kerr. “As my legal mentor used to say, ‘In social-cause cases, historically, you lose, you lose, you lose, and then you win.’”
Now that Australian euthanasia activist Philip Nitschke has burned his medical registration rather than give up promoting the right to die, he is tackling his Big Idea: rational suicide.
He is planning to hold a seminar in Melbourne next September to show that people do not have to be depressed or terminally ill to want to die. “The reality is, a portion of our population will suicide and I don’t think we should make it so hard,” Nitschke told The Guardian. He believes that bereaved spouses, long-term prisoners, and all old people should have access to lethal medications so that they can kill themselves.
“Nitschke has no understanding of mental health and related issues, and absolutely no empathy. He has demonstrated a lack of humanity and a lack of concern for those who find themselves in these situations and their families, and a complete lack of compassion for those who are socially isolated and trying to connect with their world. I find it a totally unacceptable and appalling idea that age is a proxy for the end of your useful life. To reinforce that is an abhorrent idea.”
However, Nitschke has raised – or rather revived, for the Greeks and Romans discussed the same topic – a good question. If life is really a good, can it ever be rational to take it? If it is not unconditionally good, why can’t we take it? What gives life any value? I can’t say that I have ever admired Nitschke’s ideas or his work, but without people like him, would we be asking these big questions?
But this study of why people call some things “natural” or “unnatural” could be one of the most important position papers of the decade. It is fundamentally an attempt to undermine what US bioethicist Leon Kass called “the wisdom of repugnance”. Most objections to issues like cloning or mitochondrial transfer or surrogacy are based on that hard-to-define queasy feeling in Bob and Betty’s stomachs: they just don’t pass the smell test.
And this is important.
As the Nuffield Council points out: “People’s ideas about naturalness may influence the degree to which advances in science, technology and medicine are embraced or opposed by the UK public.” So, as I read it, the report sets out to deconstruct the word, to make it meaningless, and so to bury it as a term of intellectual discourse. If people can be taught to mistrust their own intuitions, securing regulatory approval for the most far-fetched projects will be a snap.
No matter where you stand on bioethical issues, this is required reading. It could frame debates for years to come.
Oxford’s utilitarian bioethicist Julian Savulescu, with others, has proposed what they call moral bioenhancement – achieving moral outcomes with the help of drugs, genetic engineering and other technologies. As he wrote in 2012:
“Our moral shortcomings are preventing our political institutions from acting effectively. Enhancing our moral motivation would enable us to act better for distant people, future generations, and non-human animals.”
While this idea has not been greeted with great enthusiasm by most governments, there is one which may be taking it seriously – the Islamic State. Obviously, though, these gentlemen have a somewhat different view of what constitutes “acting better”.
According to reports in the French media, the terrorists who killed 130 people in Paris on November 13 were high on Captagon, a black-market amphetamine. Witnesses said that the killers were almost zombie-like. "I saw a man shoot," one witness told French TV. "I saw a man who was peaceful, composed, with a face that was almost serene, contemplative, advance towards the bar. He sprayed the terrace [with bullets] as anyone else would spray their lawn with a garden hose."
The main market for captagon is the Middle East, where organised crime, ISIS and other players manage a market worth hundreds of millions of dollars. A Saudi prince was arrested in Beirut this month after he was caught smuggling 40 suitcases of Captagon and cocaine back to Riyadh.
Masood Karimipour, of the United Nations' office for drugs and crime, says that the drug gives fighters “chemical courage”, making them feel invincible. “Certainly it is not consistent with any interpretation of Islam,” he says. However, the Islamic State seem “to be reading a different book from other Muslims in the world .. so I don’t think they’re going to draw the line at the use or distribution of drugs.”
Moral bioenhancement to achieve a global caliphate: it’s an ambitious goal, but if anyone can do, it’s these guys. It’s probably not the vision of a better world that Professor Savulescu had in mind.
A few weeks ago "pink Viagra", more properly known as Addyi, got a green light from the FDA. The drug purports to treat “hypoactive sexual desire disorder” in women. The day after the approval, Sprout Pharmaceuticals, a small company with the patent, was sold for US$1 billion in cash to Valeant Pharmaceuticals International. Valeant obviously thought it had a winner.
It turns out that it has backed the wrong horse. In the first few weeks, only 227 prescriptions have been filled. “I thought there was going to be this huge onslaught,” the director of the Women’s Health Clinic at the Mayo Clinic told Bloomberg Business.
Addyi has a lot of drawbacks; it has potentially deadly side effects, women can't drink alcohol while using it; it costs US$780 a month; and it must be taken daily. But the biggest problem might be that Valeant believed Sprout's canny public relations campaign which promoted sex as "a basic human right" and one of the FDA's "priority areas of unmet medical need". Perhaps women are more interested in commitment than a Viagra they can call their own.