Over the next couple of months we are hoping to make some improvements to the website and the newsletter. We’d like to ask your opinion.
The most significant change would be to shorten the text of the newsletter. Instead of the complete text of the stories plus illustrations, the newsletter would contain only the first one or two paragraphs so that you can decide whether you are interested in reading further. If so, you would click on a link which would bring you to the BioEdge website.
What is the reason for this? First of all, it will make the newsletter a bit easier to skim through. For quick readers, it is often too long. Also, more and more people are reading the newsletter on phones and tablets and for them it becomes a bit unwieldy.
But the main reason is to generate more traffic on the website. We would like to see BioEdge grow a lot more. Part of the solution is to increase the number of hits on the website so that it will be picked up by search engines more often.
I know that some people might prefer not to change the newsletter format. However, I think that the long-term effect will be to make BioEdge easier to read and more accessible.
Angelina Jolie’s decision to have a double preventative mastectomy is a teachable moment in bioethics. But as a columnist in the Financial Times points out, it’s hard to know what the lesson is. Jolie said that she made the news public to help other women realise that they have choices. But, given her celebrity status as an international sex symbol, she is in a league of her own. What exactly can women learn from her unique case?
Another lesson is political. Her op-ed in the New York Times was clearly aimed at influencing the deliberations of the US Supreme Court on Myriad Genetics’ claim that it can patent the BRCA 1 and 2 genes which indicate a susceptibility for cancer. Currently tests for the genes cost about US$3,000. Jolie says that women should be able to access “gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live”.
The most important lesson, perhaps, was glossed over in the wall-to-wall media coverage: how much fear influences women’s decisions about breast cancer. “We are confronting almost an epidemic of prophylactic mastectomy,” Dr Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston, told the New York Times. “I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”
Removing body parts is a pretty barbaric treatment for a disease which you don’t have. If campaigns to increase awareness of breast cancer leave women in a state of barely suppressed panic and make them take decisions which may be medically unwarranted, should we rethink the campaigns?
I just stumbled across an interesting debate in Canada over sex-selective abortion. A British Columbian MP is campaigning against it because it leads to gendercide. “Female gendercide is the systematic killing of women and girls, just because they’re girls,” says Mark Warawa. “The UN says that over two hundred million girls are missing in the world right now because of the female genocide.”
Apparently sex-selective abortion is increasing in Canada with immigration from India and China. Warawa’s is an entirely praiseworthy campaign which ought to attract bipartisan support.
Colby Cosh, a columnist for Maclean’s, is scathing in his criticism of Warawa. In an op-ed headed “Lord, send pesticide for the weed of ‘gendercide’”, he argues that if women are allowed to abort children for any reason whatsoever, why not a child’s sex? “Can we respect those choices (as we ought to) yet not respect the choice of a woman who doesn’t want to risk spending the next 20 years of her life raising” children of the “wrong” sex? “’Gendercide’ is incoherent religious militancy in cheap drag,” he sneers.
What Cosh – and the Canadian Prime Minister, Stephen Harper – don’t like about Warawa’s campaign is that its ultimate target is abortion. This is such an inflammatory subject that Harper does not want it even mentioned in Parliament. But despite Cosh’s ridicule, Warawa’s logic is irrefutable: you cannot say that you both oppose gendercide and support the procedure which makes it possible.
I suggest that the honest thing for Prime Minister Harper to do is to tell his Parliament: “look, one missing girl is a genuine tragedy; 200 million missing girls is just another bogus UN statistic; it’s no big deal. Look on the positive side: 200 million missing girls means 200 million women who made a courageous choice. Grow up. Get over it. Move on.”
This week we are highlighting a special issue of the Journal of Medical Ethics about what may be the biggest-ever controversy over an article in an academic journal. This is a paper by Alberto Giubilini and Francesca Minerva, “After-birth abortion: why should the baby live?” When it was published in February last year, it provoked much shrill criticism of bioethics as a discipline, not just of infant euthanasia. We were the first to report it, by the way.
I was pleased to note that we get a guernsey in the discussion. The editor of the journal Bioethics, Udo Schüklenk, said that BioEdge has “a larger real-world impact than most bioethics journals could dream of”.
Woo hoo!!! High fives all around!!
To be honest, I am quoting Dr Schüklenk – who is not a man to mince words -- out of context, as he regards BioEdge’s impact as baneful “agitprop”.
Oh well. Please make up your own mind on this. I’d appreciate any comments. BioEdge does have a background commitment of defending human dignity. This shapes the selection of the news and the angle of the articles. Event though absolute impartiality is impossible, our goal is to present the facts without embellishment and to let readers draw their own conclusions. We’ve tried to restrict opinions and rumination to this message from the editor (which is also available in blog form at Pointed Remarks).
Perhaps I should give a thumbs-up to the Journal of Medical Ethics and its editor Julian Savulescu. I don’t agree with his utilitarian bent, but, from a journalist’s point of view, he does a great job of presenting a wide range of newsworthy topics. They are normally quite readable, even by an agitprop Stakhanovite like myself.
Every dramatic event in the headlines seems to have a link to bioethics. This is also true of the Boston Marathon bombings. In this issue we report that researchers at Boston University are eager to see the results of an autopsy of Tamerlan Tsarnaev, the alleged bomber who was shot dead by police. As a one-time boxing champion, he could have been tipped over the edge by brain damage from his sport.
The researchers were prudent enough to admit that neuroscience may not be able to explain the atrocity completely. However, is this an example of the increasing tendency of neuroscience to seek determinist explanations for human behaviour? For instance, a recent article in Neuroethics claims that conservatives are more associated with “the dark triad” of human behaviour: Machiavellianism, Narcissism, and Psychopathy. For instance, conservatives may be hard-wired to endorse the use of waterboarding and other “enhanced interrogation techniques” in the war on terrorism.
But is this really a useful way of analysing decision-making? Taken to extremes, could we say that both Muslim terrorists and CIA torturers have been driven to these extremes by their genes, or by faulty circuits in their brains. But if that is true, perhaps democracy and altruism are all determined by our neurons as well. The room for individual agency and free will seems to be shrinking.
Every six months we conduct a fund-raising drive for BioEdge to help us improve our coverage and cover our costs. The newsletter is free, but there are some costs. You will probably receive an email later in the week – I hope that you will think about it!
One of the impressive things about the reaction of the police and the government in Boston after the terrible bomb blasts near the marathon finishing line was restraint. The authorities dampened speculation about who was responsible for the atrocity. It could have been a lone lunatic, or a right-wing militia group. Even the media waited until the facts were in. As it turns out the two suspects, one alive and one dead, are Chechen Muslims. But there was no feverish speculation, no finger-pointing, no lynch mobs.
Would that the world media had acted the same way when it covered the death of a 31-year-old dentist in Galway last November. Savita Halappanavar died of septic shock when she was 17 weeks pregnant. As her condition worsened, she asked for an abortion, but her fetus was still alive and her condition seemed manageable, so the doctors refused. Abortion is illegal in Ireland except to save the mother’s life.
The media whipped itself into a frenzy. “Ireland's law and Catholic culture allowed Savita Halappanavar to die,” was the headline in the New Statesman. There were demonstrations in London, Brussels, Berlin and India. Her death was blamed on the Catholic Church and restrictive abortion laws. There could not have been a newspaper in the world that did not carry the story.
But this week the official inquest handed down its verdict. In a unanimous decision, the jury blamed “medical misadventure”. A series of mishaps led to Savita’s death, but at the time, they nearly all seemed like reasonable decisions. It was not a story of stony-hearted prejudice and religious bias. But I don’t think that we will see many of the newspaper columnists apologising. In fact, few newspapers have even reported the story.
In any case, legalising abortion might not help women like Savita at all. Despite -- or perhaps because of-- Ireland's ban, its maternal death rate (6 per 100,000) is one of the lowest in the world, lower, in fact, than countries where it is freely available, like Australia (7), England (12), New Zealand (15), or the United States (21).
Complaining about the media is like complaining about the weather: just shut up and get on with it. However, sometimes the relative coverage given to stories is quite puzzling.
Take the Kermit Gosnell trial in Philadelphia. This is a gory story which reads like a first draft of the torture porn film Saw. Dr Gosnell is an abortionist who has been charged with the seven counts of first-degree murder and one count of third-degree murder. He allegedly killed seven babies who survived abortions and a Nepalese refugee who died after a botched pain-killer injection.
But this is just the tip of the iceberg of thousands of abortions that he did in a poor area of a major American city. Live viable, babies in the third trimester of pregnancy were delivered – and then murdered by snipping their spinal cords with scissors. One of them was so developed that the doctor joked, before snipping, “he could walk me to the bus stop”. He kept amputated feet in glass jars.
"My comprehension of the English language doesn't and cannot adequately describe the barbaric nature of Dr Gosnell and the ghoulish manner in which he 'trained' the unlicensed, uneducated individuals who worked there," said the Philadelphia District Attorney when he investigated the case.
As they say in the profession whose motto is “if it bleeds, it leads”, this is great copy.
But almost no newspaper or network, outside of Philadelphia, has covered it. As Indiana Congressman Marlin Stutzman told an empty House of Representatives, “How is it that, in our age of constant news, not a single major news outlet—not a single major news outlet—has devoted serious attention to the atrocities that weren’t committed halfway around the world but in West Philadelphia, Pennsylvania? Has our national conscience been irreversibly seared by the deaths of more than 1.2 million unborn children every year in this country?”
OK, abortion is controversial. But isn’t the Fourth Estate supposed to be fearless in tackling controversy? Besides, the really important issue is not the guilt of one bad apple, but the failure of the state bureaucracy to detect and discipline him years ago, the failure of his colleagues to report him, the failure of “legitimate” abortion providers to blow the whistle. There was a complete bioethical collapse. The trial of Kermit Gosnell is, believe it or not, a bigger story than PSY’s new YouTube clip or even Kim Kardashian’s divorce. Why isn’t it on the front page?
The Age, a leading Melbourne newspaper, recently ran several articles chronicling a local woman’s decision to take her own life. It was not for any particular reason – 83-year-old Beverley Broadbent just thought it would be better to go while she was still mentally alert and physically active.
Health editor Julia Medew interviewed her and arranged to report how she had come to her decision and why rational old age suicide was a good idea. Under the headline “Suicide a calm and beautiful ending, says witness,” Medew described how a mysterious woman named Amanda accompanied her as she swallowed a lethal dose of Nembutal on the evening of February 11.
Miss Broadbent’s death raises a number of bioethical issues. But it also ought to spark a discussion about Medew’s journalistic ethics. In the first place, a journalist is first of all a human being. Didn’t Medew have a moral obligation to dissuade a relatively healthy woman from committing suicide?
Second, far from being an objective report, Medew’s articles were an unpaid advertorial for Exit International, the euthanasia lobby group headed by Dr Philip Nitschke. In an unsubtle bit of product placement, she even mentioned Nitschke’s “peaceful pill”.
Third, guidelines issued by the World Health Organization about reporting suicides counsel journalists to “Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems”. Medew’s series of articles did all three.
And finally, in a bit of face-saving cognitive dissonance, The Age placed the following sentence at the foot of each article: “For help or information visit beyondblue.org.au, call Suicide Helpline Victoria on 1300 651 251, or Lifeline on 131 114.” That’s what I call having your cake and eating it too: painting a rosy picture of one woman’s suicide and then darkly warning everyone else of its dangers. It’s hardly convincing.
The WHO warns that media reporting of suicide can lead to copycat suicides. “It varies as a function of time, peaking within the first three days and levelling off by about two weeks, but sometimes lasting longer. It is related to the amount and prominence of coverage, with repeated coverage and ‘high impact’ stories being most strongly associated with imitative behaviours.” I wonder if The Age will investigate whether or not its irresponsible reporting has caused more deaths.
A bioethicist from Sikkim, in India, Subrata Chattopadhyay, and two US colleagues make a good point in a recent issue of the Journal of Bioethical Inquiry. Why are there so few bioethicists from developing countries on the editorial boards of the leading bioethics journals? Some major journals have none at all.
If the journals were more open to commentary from the developing world, would different perspectives emerge? I suspect so. The issues which keep us in the developed world awake at night revolve around autonomy – euthanasia, reproductive freedom, informed consent and so on.
If other countries were better represented, perhaps notions of naturalness and acknowledging the individual’s obligations to society would be highlighted.
There will be no BioEdge next week because of the Easter holiday here in Australia.
The big event of the week was the election of a new Pope in Rome. The fact that about 6,500 journalists were reporting on the white smoke suggests that his ideas on bioethics ought to be taken into account, whether or not you agree with them. I hope that my own sympathies don’t colour the articles in BioEdge too much, but I ought to disclose that I am quite partial to his ideas.
Even though Pope Francis has clocked up a list of firsts, bioethical innovation is unlikely. No headlines like: “New Pope summons Peter Singer to Vatican to hammer out encyclical on end-of-life issues”. We have translated a few paragraphs from one of his recent books to give you a feeling for his approach.
Xavier Symons has joined BioEdge as a staff writer. He is a philosophy post-graduate student at the University of Sydney. Welcome aboard, Xav!