In 2004 voters in California passed Proposition 71, a ballot measure which set up the California Institute for Regenerative Medicine (CIRM) and allotted US$3 billion in funding over ten years.
With California almost broke at the time, its prisons overflowing, its schools underfunded, its universities on a starvation diet, this was not an initiative which made a lot of sense – except that the Bush Administration was refusing to fund embryonic stem cell research.
Californians were told that life-saving science was being held hostage to political conservatism and religious dogma. Embryonic stem cells and therapeutic cloning would cure diseases ranging from cancer to HIV/AIDS to mental health disorders. If the Feds wouldn't support it, California had to step forward. So 59 percent of voters supported the establishment of the CIRM. Why wouldn’t they? The official voter information guide said that “Proposition 71 is about curing diseases and saving lives”. Who could argue with that?
Ten years later, the CIRM is gearing up to ask voters for another $5 billion in 2016.
Unfortunately for the CIRM, the most impressive advances in stem cell science during that time happened elsewhere. It was a Japanese researcher who won the Nobel Prize for stem cell science.
And more importantly, there have been no cures. “Almost every country would be jealous of what they've got in California,” Christine Mummery, a scientist from the Netherlands, told Nature recently. The CIRM has great scientists, the best facilities, the most funding, hundreds of scientific articles. But says Dr Mummery, “they haven't cured a patient, which is the critique”.
The total cost to the Californian taxpayer will be $3 billion for research approved in 2004 plus $3 billion interest plus $5 billion in 2016 plus $5 billion interest. That's $16 billion. It seems like an expensive consolation prize for the CIRM's scientists for not having won a Nobel. My advice to Californians is: don't do it.
Most of our readers probably live in countries where bioethics often revolves around the proper use of sophisticated medical technologies. My attention was drawn this week to a case in Sudan, where engagement with the technology is fairly simple: shackles and a noose.
At the centre of this case is Meriam Ibrahim, the Sudanese wife of an American citizen. In May, while she was heavily pregnant with her second child, she was found guilty of apostasy from Islam and sentenced to 100 lashes and death as soon as she weaned the baby. She refused to renounce her faith.
The Islamic government in Sudan interprets apostasy with a great deal of latitude. Ms Ibrahim was born to a Coptic Orthodox mother and a Muslim father who deserted the family when she was six. She was raised as a Christian but in the eyes of the Islamic state, she remains a Muslim. Marrying a Christian constitutes apostasy in Sharia law.
The cruelty of her confinement suggests that Sharia law also presents bioethical issues. Ms Ibrahim gave birth in jail but remained shackled throughout her labour. "I gave birth chained," she said. "Not cuffs – but chains on my legs. I couldn't open my legs so the women had to lift me off the table. I wasn't lying on the table." Now she believes that her baby is disabled because of the difficult birth. "I don't know in the future whether she'll need support to walk or not."
After an enormous amount of pressure, Ms Ibrahim was released from prison in June. But after she bought a ticket to the US, she ended up in jail once again. She is still awaiting permission to leave. A UNESCO chair for biosciences ethics was established at the University of Khartoum in 2012. I wonder if the University would be interested in looking into Ms Ibrahim’s case.
Archduke Ferdinand of Austria was assassinated 100 years ago today in Sarajevo. Within weeks the world was at war. In another four years some ten million soldiers and seven million civilians would be dead. Wars are a great time for innovation in many areas, but not in bioethics. My impression is that the basic principle of bioethics in “the Great War” was “whatever it takes to win”.
Poison gas, for instance, was banned by international conventions in 1899 and 1907. Yet it was used by all the belligerents. An English general put it nicely:
“It is a cowardly form of warfare which does not commend itself to me or other English soldiers. We cannot win this war unless we kill or incapacitate more of our enemies than they do of us, and if this can only be done by our copying the enemy in his choice of weapons, we must not refuse to do so.”
But perhaps we can learn something from World War I. Twenty-first Century bioethics has two main themes. One is autonomy and there’s precious little of that in the Great War. It was a time of massification and state dominance.
But the other is how to use technology without losing our humanity. In this respect, World War I is a cautionary tale. Before 1914 technology was esteemed as the path to peace and prosperity. It quickly became apparent that technology could become a death-dealing juggernaut which devoured men and spat them out. Science and scientists became tools for destruction.
I think that we need to be reminded of that today. The pre-War chemistry laboratories which produced so many useful products also produced phosgene and mustard gas. Our knowledge of cellular biology and genetics can be life-saving but also deeply inhumane. It’s good to learn from the past.
There have been a few moments in my life when I wished that I could speak Czech, which may be the most difficult of the Slavic languages. Today was one of them, as I tried to investigate a storm in a teacup in a Czech bioethics journal.
A senior university lecturer and Czech government adviser, 78-year-old Miroslav Mitloehner, has been sacked from his positions over the views he expressed in Časopis zdravotnického práva a bioetiky (Journal of Medical Law and Bioethics).
Mr Mitloehner’s argument was a familiar one: that children born with a severe disability should be left to die. He explains in the abstract: “It should be possible to abandon the effort to save lives (even when there is a chance of survival) when the malformations of the neonates are so severe that they exclude the future possibility for meaningful and conscious human existence.”
This is not just a common argument; it is effectively legal in the Netherlands and it is a common practice in many other countries.
Unfortunately tact must not be among Mr Mitloehner’s finer qualities for he used a word to describe these children which has been translated as “freaks”. Disability activists exploded and Mr Mitloehner became an unemployed bioethicist. (Here is where fluency in Czech would come in handy: I believe the offending word was “podivín”.)
By some stroke of good fortune, the editors of Časopis zdravotnického práva a bioetiky were able to dissociate themselves from Mr Mitloehner without repudiating his widely accepted ideas. They discovered that he had published the same article in another journal in 1986, so they have banned him from the journal. They did not apologize for the crude views.
I have learned an important lesson from this imbroglio: language matters in discussing infanticide. If babies are called “freaks”, you will lose your job. If you speak respectfully about killing them, you will (like Peter Singer) get awards from your government.
Perhaps the most thrilling moment of the 2014 World Cup in Brazil has already passed. Although most television stations missed it, a paraplegic man delivered the opening kick using an exoskeleton. It was an amazing feat of technology which promises terrific benefits for disabled people. I wish all the teams well, but the jubilant look on the face of 29-year-old Juliano Pinto may have signalled the most important kick of the entire tournament.
One of our readers recently complained that BioEdge was running too many articles on surrogacy and euthanasia. I am pleased to announce that my conscience is clear on the former; there are no articles on surrogacy this week.
However, it is hard to avoid the latter. This week euthanasia was legalised in Quebec -- for the first time in North America -- and a nurse in Belgium has been arrested for having killed 40 or more patients out of compassion.
“I want to congratulate ourselves as parliamentarians,” said one politician. “Quebec is a beautiful society, and again today Quebec has just shown that we are really, really a different society.” I cannot say that I share her optimism. A law which allows one group in society to take the lives of others out of the eye of the law and the public is open to abuse.
Exhibit A this week is the Australian assisted suicide activist, Dr Philip Nitschke. Police in Melbourne have questioned him about a suicide pact by two elderly women (which we did not report to keep from overloading the newsletter). They had used equipment obtained from him and recommended by him (although he was not directly involved). Dr Nitschke’s attitude towards the law is consistent: it is an ass. He shows his contempt by helping people to commit suicide, but without stepping across the line into criminality. There will always be doctors like him who believe that any law is too restrictive. If euthanasia is legalised, will they keep pushing the boundaries further and further out?
Exhibit B is extraordinary revelations in Belgium, where a nurse who was also a Catholic deacon used his privileged position to kill scores of people, probably without their consent. There will always be twisted people like him. If euthanasia is legalised, will there be more of them?
Can it be wise to follow Quebec’s lead if we can foresee that more half-deranged and fully-deranged minds like these will be encouraged to embark upon private crusades to drown the world with compassion?
Another challenge to be faced by bioethics in the decades ahead is the downstream consequences of falling birth rates.
Once fertility begins to fall, it keeps falling to levels which once seemed (sorry) inconceivable. The replacement birth rate is 2.1 children per woman. But in South Korea, parts of Spain, and Russia it has fallen below 1.3. At that rate, population begins to decline fairly rapidly. A small population could have big political consequences.
This worries the leaders of Iran. The birth rate in Iran has fallen more swiftly than anywhere else in the world – from 6.4 in 1986 to a current low of 1.8. When they look into their crystal ball, they see a weak and depopulated nation.
This is why the Supreme Leader, Ayatollah Ali Khamenei, recently released a 14-point plan to reverse decades of propaganda for small families and double his country’s population to 150 million. His proposals include: increasing the birth rate to more than 2.3; lowering the age of marriage; an Islamic-Iranian lifestyle and opposing undesirable aspects of the Western lifestyle; and providing treatment for both male and female infertility.
A bill is already being drafted to ban abortions and sterilisations. Government support for family planning and contraceptives has already been discontinued. A program offering free vasectomies has been terminated.
For Westerners like me, the social policy and politics of a theocratic country like Iran are quite mysterious. But if its rulers are as impatient and stubborn as the media makes them out to be, they may try to impose pro-natal policies, lest they drift into geopolitical irrelevance. Today most bioethics deals with issues relating to having fewer children. What happens when women are pressured into having more children? What dilemmas will bioethicists face then?
I wonder if the next frontier in the practical side of bioethics will be elder care. With the number and proportion of over-65s growing everywhere, opportunities for abusing defenceless elderly are multiplying.
Take the scandal in Mississippi over its June 3 Republican Senate primary. The incumbent is 76-year-old Thad Cochran, a 36-year veteran of the Senate with a thatch of white hair. In the eyes of Tea Party Republicans the Senator is extremely liberal. And extremely old. Money is pouring into the state to knock Cochran off his perch and replace him with a 41-year-old breath of fresh air, Chris McDaniel, a state senator.
However, some of Mr McDaniel’s supporters have been too eager to prove just how decrepit Senator Cochran is. A pro-McDaniel blogger, Clayton Kelly, entered a nursing home where Senator Cochran’s bed-ridden wife Rose, who suffers from dementia, is being cared for. He took photos of her, added them to a video, and posted it on the internet. The message: an old liberal guy with a ailing wife shouldn’t represent the great state of Mississippi. The strategy has backfired. Senator Cochran is holding his own after the invasion of his wife’s privacy. Mr Kelly has been charged with "exploiting a vulnerable adult". Two other men have also been arrested.
Mr McDaniel has been reduced to complaining that Senator Cochran is exploiting a “sick individual” (ie, Kelly) for electoral advantage. Since this is precisely what Kelly did to Mrs Cochran, it’s hard to see how this will get traction with voters. The breath of fresh air has been tainted by a burp from the sewer.
Another week of mud-slinging in American electioneering. For media junkies, it’s very entertaining and will soon be forgotten. But it may foreshadow a society where the elderly are routinely discriminated against, exploited, vilified and abused. Geriatric bioethics will be a growth area.
First, a couple of self-referential issues. We have changed our commenting software to Disqus, a popular and robust add-on which is used on many big websites. It works much the same as the old system, but is easier for the moderators. The transition was relatively smooth, but I fear that a couple of comments might have been lost. I apologise if they were yours.
We have launched our six-monthly BioEdge appeal for donations. You still have a month left, so don’t panic! We do not have a big institutional donor backing us, so please think about it.
As for other matters, our stories this week cover a wide range of topics, from doctor-cide in Syria, to animal rights, to prenatal testing for autism.
But one item in my background reading that I found riveting was the blog of Rudy Rupak Acharya, the founder of a leading medical tourism company in California called Planet Hospital. Although he claimed to be a broker for procedures ranging from teeth whitening to hip replacements, surrogacy was a major part of his business.
What appalled me was how crass making babies becomes when profit supplants romance. What’s love got to do with it anyway? Here’s the raucous, pitchman voice of Rudy:
In Mexico, we have actually managed to make the costs as cheap as India when you take air, hotel, and visas into consideration. I am saddened to see this latest crap circus [a ban on gay surrogacy] come blazing out of the poop shoot of Indian bureaucracy because it ruined the plans of so many people …
A word to our competitors. Be decent and build your own opportunity but do not try to leach off of us. We have signed exclusives with our clinic already while you were trying to figure out what hit you…
We here at PlanetHospital.com will provide you with the impeccable service that many of our clients praise us for and use our experience to guide you. We will also provide you with options in Mexico, Thailand and Panama. We understand what you need and what you are looking for and it is our pleasure to make it happen stress free, and we will even throw in a free pizza for you …
I think that Margaret Atwood could make a novel out of Rudy’s blog posts without much effort at all. Oh, and by the way, Rudy’s company has been forced into involuntary bankruptcy, with an alleged US$1 million owing to his creditors, many of them couples seeking to acquire children. No more free pizzas, guys.
As the 50s recede into the rear-view mirror, for many people they become suffused with a nostalgic glow. But they had at least one defect: doctors were quite careless about this all this annoying informed consent stuff, especially when their patients were young, indigent or military.
This week we have highlighted experiments on children in a psychiatric hospital in Vienna. Doctors deliberately infected them with malaria which affected them for years afterwards. This is relatively minor compared with the infamous Tuskegee syphilis experiments in the US, which ran from 1932 to 1972, in which researchers withheld treatment from black sharecroppers.
If you have the stomach for it, there is a Wikipedia article listing many more stomach-churning experiments in the 1940s, 50s and 60s. (Yes, I know, Wikipedia is not reliable, but its lists are useful.)
We recognise that these experiments were exploitative, but at the time, doctors and scientists often just shrugged their shoulders and got on with the job. In hindsight it is easy to say that they were blind to the ethical dimensions of their work.
But what of us? Are there aspects of today’s medicine which seem acceptable and ethical which will be condemned as debased and immoral by our grandchildren? Or have we entered a golden age of moral perfection? Any ideas?