Two videos

Does anyone else feel that that they are being suckered by the Brittany Maynard videos produced by the assisted suicide group Compassion & Choices? Brittany, you must remember, is the 29-yar-old woman who chose assisted suicide in Oregon last year, rather than suffer a slow decline because of a brain tumour.

She made two videos which went viral on YouTube – no wonder, as they were directed by a New York public relations firm which put together a multi-platform media campaign called Twenty Nine Years for C&C. 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. Brittany was interviewed on national television. C&C has a lot riding on her story.

This week, Brittany spoke from the grave to California legislators in video testimony about a bill to legalise assisted suicide. While it lacks the professional gloss of the first two, it is poignant and direct – just the thing for fence-sitting legislators.

But I found it a little bit creepy: the poor woman was being ventriloquized by C&C and exploited as a pin-up girl for assisted suicide. Her words add nothing to the debate except the tragedy of premature death.

Let’s be honest. Isn’t this a bit sexist and ageist? If Brittany were 59 instead of 29, would she have become a YouTube sensation? I think not. In fact, Maggie Karner, a Connecticut woman, has exactly the same disease and has no intention of asking for assisted suicide. Take a look at her video. It makes a lot more sense than Brittany’s. 

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March 21 is Down Syndrome Day

Hi there,

Today, March 21, is World Down Syndrome Day. Down Syndrome, also called Trisomy-21, occurs when people have a third copy of their 21st chromosome – hence the choice of March 21. In 2011 the United Nations passed a resolution supporting the celebration and declaring grandiloquently that:

People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults with ‘opportunities’ and ‘choices’.

This is the theme of a series of very touching and entertaining YouTube interviews with Down Syndrome people around the world which were released this week. The organisers of the Day, a British charity called Down Syndrome International, say that people with Down Syndrome are discriminated against and are often denied the right to participate in civic life.

What’s odd about this complaint is that the biggest discrimination is not mentioned at all – the right to participate in life, period. Statistics vary, but an estimated 90% of women who know that they are pregnant with a Down Syndrome Child choose to abort it. Increasingly accurate prenatal testing services will ensure that fewer and fewer Down Syndrome Children enter the world, with the connivance of governments and doctors. In practice, the “choice” which Down Syndrome advocates are supporting is, sadly, the choice that adults make when they disabled children.

The generous and self-sacrificing work of Down Syndrome International must be acknowledged. But a bit of realism is in order, too. Why is it so reluctant to mention that Down Syndrome children are being denied their right to life?  

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The bright side of Ebola

Does Ebola have a silver lining? According to the latest figures from the World Health Organization, 9,976 people have died of the disease since last March: 4,162 in Liberia; 3629 in Sierra Leone; 2170 in Guinea; 8 in Nigeria; 6 in Mali; and 1 in the United States.

It may seem cynical, but that single death in the US may be good news. For years, researchers have been studying Ebola, but it was only when some Americans became infected that the bells went off. The developed world realized that this ferocious killer could take root here, instead of over there somewhere. Interest rose exponentially.

Writing in PLoS Neglected Tropical Diseases, a researcher from the University of Kansas, A. Townsend Peterson, points out that scientific and pharmaceutical interest in West Nile virus only took off after it appeared in the US in 1999. Something similar is happening with Ebola.

“How many other neglected diseases must await this process of spread to affluent regions and infection of affluent people, making the transition from neglected tropical disease to emerging infection, before they also will see investment and innovation?” he asks.

Globalization has some unexpectedly positive spin-offs. 

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In search of new kinship terms

I am really working above my paygrade here, but I propose a thorough revision of Lewis Henry Morgan’s classic text, Systems of Consanguinity and Affinity of the Human Family. Back in 1871 he identified six fundamental systems that languages have for classifying relatives: Hawaiian, Sudanese, Eskimo, Iroquois, Crow and Omaha. (English is regarded as an Eskimo-type language.) 

Of these six systems, the most complex is the one used in southern Sudan. Every possible relationship has a unique word to describe it, whether it is “mother” or “mother’s brother’s first son’s youngest daughter”.

In the course of probing research into kinship terms over the past 20 minutes I discovered that nowadays Morgan’s classifications are considered outdated. At least one more system has been discovered, the Dravidian system, and some languages add refinements like distinguishing between older brother and younger brother. Some Australian Aboriginal languages use the same terms of address for alternating generations.  

If you have got this far, you are probably getting a bit impatient.

My point is that we need a new burst of creativity to invent new words for relationships created by assisted reproductive technology. In this week’s newsletter, for instance, we have a biological mother acting as surrogate mother for her biological son. A couple of weeks ago, we reported a lesbian using her brother’s sperm to impregnate her partner. English is already poor in kinship terms. Can it possibly cope with the pressure of surrogacy and gamete donation or even gamete creation? 

We have reason to hope.

The roots of modern English are in Anglo-Saxon and (remotely) Latin. Both of these defunct languages followed the Sudanese system, with different names for each relationship. Anglo-Saxon, for instance, had eight different terms for cousin. What they did, we can do. Any suggestions?

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Religion and bioethics

Hi there,

Even writing a short column like this one is a tough job. Those who agree with you expect more gold when the lode is nearly exhausted; those who disagree with you demand minute documentation; those who are merely curious will not return if the punctuation is sloppy. There’s a deadline and it has to be posted quickly. It can make you quite dyspeptic.

Which perhaps explains a post written by the incoming associate editor of the Journal of Medical Ethics, Brian D. Earp. An Oxford theologian, Nigel Biggars, argues in the JME that there is a place for religion in bioethics and medicine. (See below.) Fiddlesticks, says Earp. “Some people will feel a shiver go down their spines—and not only the non-religious.”

I thought for a moment that he must have been referring to the intersection of religion and cardiology documented in The Discovery And Conquest Of Mexico, by Bernal Diaz. (A fabulous read, by the way.)

"The dismal drum of Huichilobos sounded again, accompanied by conches, horns, and trumpet-like instruments. It was a terrifying sound, and when we looked at the tall cue [temple-pyramid] from which it came we saw our comrades who had been captured in Cortés defeat being dragged up the steps to be sacrificed. …Then after they had danced the papas [Aztec priests] laid them down on their backs on some narrow stones of sacrifice and, cutting open their chests, drew out their palpitating hearts which they offered to the idols before them."

But no, Earp was referring to Christianity, whose distinctive contribution to medicine, apparently, is to deny women life-saving abortions. It’s odd that he ignored the Good Samaritan ethic which gave rise to the modern hospital system and the well-documented origin of bioethics in Catholic medical ethics. And, as Biggar points out, notions of human dignity and a preferential option for the poor are grounded in Christian ethics.

If we are looking for a philosophy to animate good medical care, we could do worse than Christianity, quite a bit worse. I think that the jury is still out on whether religion-less, secular medical ethics has really been a big improvement. 

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The noble lie

Hi there,

I just came across an opinion piece in New Scientist by one of its feature editors, Michael Le Page. It’s not the sort of opinion that surfaced in the media before Parliament passed the “three-parent baby” law earlier this month.

Mr Le Page says candidly that the law allows genetic engineering. “The decision to allow three-parent babies is right. But the fact is, opponents were also right to describe this as a step towards tinkering with the rest of our genome.”

He goes on to argue that most scientists concealed their true opinions on the matter out of “political expedience”. “I suspect many biologists harbour similar views, but not many say so openly. Instead, they back three-parent babies but say it isn't really genetic engineering.”

I wonder if Mr Le Page understands the seriousness of the allegation he makes here. He is saying that the scientists involved in selling the idea of “three parent babies” lied to the public -- even though this was clearly of the most ethically challenging bioethical issues ever debated in Parliament.

The last time I checked, lying was deeply immoral. Perhaps there are exceptions, though, if scientists need to lie to people who are troublesome and stupid. Then it’s probably OK.

The problem with lying, though, is that one quickly acquires the habit of deceit and manipulation. Then it becomes harder and harder to trust anything the liar says.

I do hope that Mr Le Page is wrong about this. What do you think? 

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Poverty and health

Hi there,

If there is a theme for the stories in this week's newsletter, it is that poverty is bad for your health. After the Greek economy tanked, as Xavier Symons reports below, the standard of health care has become dismal. It's one more reason to fear a global economic meltdown. 

But it also leads to some confused thinking. British Prime Minister David Cameron has announced that obese people who are collecting a sickness benefit may be kicked off the welfare rolls if they do not follow their doctor's treatment regime (see below). This tough medicine sounds sensible if you believe that obesity can be solved just by pushing yourself away from the table.

However, lots of research has shown that obesity is a complex problem. Poverty is one of its causes, or one of the factors associated with it. Will making people poorer make them slimmer? Is Mr Cameron's plan a daring new health policy, or is it just grandstanding? What do you think?


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Canada legalises assisted suicide

Assisted suicide in Canada has been described as “an idea whose time has come”. It’s a reality now after Friday’s unanimous Supreme Court decision.

What intrigues me is: why Canada? Something is going on there. Canada must be the only country in the world without an abortion law. Canada was the first sort-of Anglophone country to legalise same-sex marriage. And now Canada is the first sort-of Anglophone country to legalise assisted suicide.

Why is Canada so ethically progressive even though it struggles to keep from being stereotyped as “the world’s most boring country”? (Check Google.) Does it have something to do with the tension between Francophone Quebec and the rest of the country?

I suspect that Americans are really ignorant of the cultural currents in their northern neighbour. But to see where the US, the UK, Australia and New Zealand are heading, they need to study how the second largest country in the world already got there.

Any ideas? 

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Just one more sleep before the Super Bowl

Hi there,

It was extremely distracting, but as we were toiling over BioEdge today, we also had to watch the final in the Asian Cup. The 2-1 win by the Socceroos over South Korea in extra time will be a great boost for soccer in a country where there are four competing codes: rugby, rugby league, AFL and soccer, all confusingly called “football”. There is even a small league playing what Americans call “football” and Australians call “gridiron”.

It was a great game, although the best goal of the tournament was scored by Tim Cahill in the quarter-final against China: a bicycle kick into the left corner of the net. It was quite stunning and the video went viral.

Um, bioethics…? OK, OK, OK. Sorry.

I came across a post on the blog of the American Journal of Bioethics about gridiron, sorry, football, which asks whether bioethicists can ethically watch a game with such poor health outcomes for its players. Many develop Parkinson’s, Alzheimer’s, uncontrollable aggression, cognitive impairment and other disorders. Not to mention another issue, the US$10 million that the NFL has spent studying concussed mice, to the disgust of animal rights activists. “It is important to question whether supporting the NFL detracts from our duties as bioethicists and the goals of our profession,” writes Keisha Ray.

Dr Ray seems to be dragging bioethics back to its roots in Catholic medical ethics, as  this is a typical question debated by theologians in the field of “cooperation in evil”. The question she is really asking is whether bioethicists just have to be smart or whether they have to be saintly and smart.

Anyhow, after watching the Australia-South Korea match, I have a suggestion. What if the US banned gridiron and adopted soccer? Soccer lacks the moral complications of gridiron, has a lower level of injuries and is a world game. I doubt whether European soccer clubs are shelling out US$675 million to care for brain-damaged players and their families. 

Just a thought which we can debate further after the New England Patriots meet the Seattle Seahawks tomorrow in Super Bowl XLIX.


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There is an apocryphal story of an advertisement placed in the matrimonial pages of a North India newspaper: "Family seeks homely, attractive, convent-educated girl for son. Caste no bar. But must be able to drive tractor. Photo of tractor appreciated." That is a joke, of course, but the real advertisements are just as intriguing for Westerners. One feature of a desirable “boy” or “girl” is a fair complexion, often described as a “wheaten” complexion.

The industry which has sprung up to feed the demand for lighter skin in India is worth an estimated US$500 million. Advertisements in magazines and on television drum home the message that a lighter skin gets the boy/girl/job. This is obviously perpetuating stereotypes about beauty, class, and caste as well as exploiting anxieties about body image. Is it ethical? That is the question posed by one group of academics in a story below.

An even more serious issue in the same vein is whether doctors should comply with requests for virginity tests. Like female genital mutilation, this is a practice which has spread to Western countries with migration. A South African doctor argues below that national colleges of doctors should declare that this is completely beyond the pale.

We’d love to get your comments on these stories. 

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