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Killing by praying

Dale and Leilani Neumann are Pentecostal Christians. Their 11 year old daughter, Kara, fell ill. In fact she had (undiagnosed) diabetes. Her parents refused to obtain medical help. Instead they prayed.

‘Kara’s father testified that death was never on their minds.  He testified that he knew Kara was sick but was “never to the alarm of death,” and even after she died, her father thought that Jesus would bring Kara back from the dead, as he did with Lazarus.

The parents and friends testified that the parents took tangible steps to help Kara.  The mother tried to feed Kara soup and water with a syringe, but the liquid just dribbled out of Kara’s mouth.  The father tried to sit Kara up, but she was unable to hold herself up.  At some point, Kara involuntarily urinated on herself while lying unresponsive on the couch, so they carried her upstairs and gave her a quick sponge bath while she lay on the bathroom floor.

At one point, Kara’s maternal grandfather suggested by telephone that they give Kara Pedialyte, a nutritional supplement, in order to maintain the nutrients in her body.  The mother responded that giving Kara Pedialyte would be taking away the glory from God.  Kara’s mother had told another visiting friend that she believed that Kara was under “spiritual attack.”

Friends Althea and Randall Wormgoor testified that they arrived at the Neumanns’ home on Sunday at approximately 1:30 p.m.  The Wormgoors saw that Kara was extremely ill and nonresponsive.  Her eyes were partially open but they believed she needed immediate medical attention.  Randall Wormgoor pulled Kara’s father aside and told him that if it was his daughter, he would take her to the hospital.  The father responded that the idea had crossed his mind, and he had suggested it to his wife, but she believed Kara’s illness was a test of faith for their family and that the Lord would heal Kara….’ [1]

But the Lord did not. Or at least not physically. Kara died from diabetic ketoacidosis. The evidence was that, with conventional medical care, she would have lived. Read More »Killing by praying

Introversion and Well-Being

A recent British study has suggested that the exhibition of certain personality dispositions in youth can serve as reliable indicators of well-being in later life . The data obtained in this longitudinal study suggest that subjects who score highly for extroversion in youth tend to report greater well-being in later life. In contrast, those who score highly for neuroticism in youth report lower satisfaction with life in follow up questionnaires; the authors also posited that these subjects also experienced indirect detrimental effects on their well-being by virtue of the psychological distress and poor physical health that has been linked to neuroticism.Read More »Introversion and Well-Being

Does Madeleine McCann deserve never to be found?

by Rebecca Roache

Follow Rebecca on Twitter

Several news sources reported today that Scotland Yard has launched a formal investigation into the disappearance of Madeleine McCann, following the emergence of ‘new evidence and new theories’. Madeleine disappeared from her family’s holiday apartment in Portugal in 2007, a few days before her fourth birthday. Her parents had left her and her siblings alone in the apartment one evening while they dined with friends at a restaurant. The years since her disappearance have seen a botched Portuguese police investigation, the arrest and release of Madeleine’s parents, various unconfirmed sightings and false leads, a private investigation commissioned by the McCanns, a Scotland Yard case review, and a massive media campaign driven by the McCanns. The case is controversial: among other things, various people have complained that attention to it eclipses other abducted children, and have suggested that media interest in it is partly due to the fact that Madeleine is from a respectable, educated, white, middle-class family.

Perhaps some of this criticism is warranted—I don’t wish to engage with it here. Personally, I am happy that Madeleine’s disappearance is to be investigated, and I hope that it sends a clear indication that this sort of crime will be taken seriously even when a child disappears outside his or her community, with all the difficulties this raises for any investigation. I wish, instead, to focus on a particular complaint about Madeleine’s case that arises again and again each time the case reappears in the news: the view that the case is undeserving of serious attention because the fact that Madeleine’s parents left her unsupervised means that they are partly to blame for her disappearance. This complaint appears many times in comments on a recent Daily Mail story about Madeleine.Read More »Does Madeleine McCann deserve never to be found?

Three person IVF

It was announced yesterday that the government is moving towards allowing so-called three person IVF for the creation of embryos free of mitochondrial disease.

The mitochondria are tiny organelles in the body of the cell, concerned with important energy functions, and which contain a small amount of DNA. They are present in the egg, but not in the sperm, and are passed down the female line, more or less unchanged, from mothers to all her offspring, and then from daughters to grandchildren and so on. In some cases, women can suffer from various mitochondrial disorders, which they are at risk of then passing on to their children. These disorders may be relatively mild, but in perhaps 5 – 10 cases a year in the UK, babies will be born with very serious disease.

There are a couple of ways of doing the new procedures, but basically the new proposed techniques take the egg of an affected woman and remove the nuclear DNA (the vast majority of our DNA which goes to shape our basic features). A donated egg is also taken, its nuclear DNA removed, leaving behind the healthy mitochondrial DNA. The nuclear DNA of the affected woman is then transplanted into the body of the healthy egg, resulting in an egg which has the DNA of the affected woman, minus the tiny fraction of mitochondrial DNA concerned with cell energy functions.

The Department of Health has backed this procedure after the HFEA conducted public consultations earlier this year; the HFEA reported broad public support for the techniques.  The Chief Medical Officer is now urging the drafting of regulations to allow the procedure to be approved by Parliament as soon as possible. There are hopes that the first patients could be treated as soon as 2014.

Mitochondrial disease can be really severe and lead to great suffering and early death. So why would there be any doubts about the use of such techniques?

Read More »Three person IVF

Secret snakes biting their own tails: secrecy and surveillance

To most people interested in surveillance the latest revelations that the US government has been doing widespread monitoring of its citizens (and the rest of the world), possibly through back-doors into major company services, is merely a chance to smugly say “I told you so“. The technology and legal trends have been clear for a long time. That intelligence agencies share information (allowing them to get around pesky limits on looking at their own citizens) is another yawn.

That does not mean they are unimportant: we are at an important choice-point in regard how to handle mass surveillance. But the battle is not security versus freedom, but secrecy versus openness.

Read More »Secret snakes biting their own tails: secrecy and surveillance

Casinos should say: ‘Enough. Go home.’

Over about 14 months, Harry Kakavas lost $20.5 million in a casino in Melbourne. It could have been worse. He put about $1.5 billion on the table. He sued the casino. It knew or should have known, he said, that he was a pathological gambler. It shouldn’t have continued to take his money. It should have protected him from himself. Nonsense, said the High Court of Australia.

Here’s why:

‘Even if, contrary to the findings of the primary judge, the appellant did suffer from a psychological impairment, the issue here is whether, in all the circumstances of the relationship between the appellant and Crown, it was sufficiently evident to Crown that the appellant was so beset by that difficulty that he was unable to make worthwhile decisions in his own interests while gambling at Crown’s casino. On the findings of fact made by the primary judge as to the course of dealings between the parties, the appellant did not show that his gambling losses were the product of the exploitation of a disability, special to the appellant, which was evident to Crown.

Equitable intervention to deprive a party of the benefit of its bargain on the basis that it was procured by unfair exploitation of the weakness of the other party requires proof of a predatory state of mind. Heedlessness of, or indifference to, the best interests of the other party is not sufficient for this purpose. The principle is not engaged by mere inadvertence, or even indifference, to the circumstances of the other party to an arm’s length commercial transaction. Inadvertence, or indifference, falls short of the victimisation or exploitation with which the principle is concerned.‘ (paras 160-161 of the judgment).

So it all turned on findings of fact (it wasn’t ‘sufficiently evident’ that his losses were the result of a disability, and if they were, they weren’t the product of a disability ‘special to the appellant.’)

That last criterion is interesting. The court seems to be implying that everyone who puts themselves in the position of losing large amounts of money in a casino is necessarily not quite right in the head. To establish liability you need a degree of vulnerability over and above that possessed by the ordinary punter. By accepting the trial judge’s finding that Kakavas did not suffer from a ‘psychological impairment’, the court was presumably saying: ‘Right: so Kakavas is weak and easily exploited: but that’s true of everyone who walks through the door, buys some chips and sits down at the table. That sort of weakness is within the general bell curve of human flabbiness. But Kakavas wasn’t particularly, dramatically, visibly weak.’Read More »Casinos should say: ‘Enough. Go home.’

Ethics and the Limits of the Randomized Controlled Trial: Time to Enhance Access to Novel Therapies in Lethal Diseases?

Parts of this blog are drawn from ‘Improving access to medicines: empowering patients in the quest to improve treatment for rare lethal diseases’, a forthcoming paper  in the Journal of Medical Ethics

Jenn McNary witnesses the miracles that modern medicine can produce every day when she sees her son Max, once increasingly reliant on a wheelchair due to his Duchenne muscular dystrophy, now able to walk, run and jump, the progression of his deadly disease apparently halted due to his enrolment in a clinical trial of a new drug, Eteplirsen.

Tragically, she also witnesses the suffering of her son Austin, who has the same genetic condition, denied the drug as his disease progresses and left no longer able to leave his wheelchair unaided. Like most with Duchenne muscular dystrophy, he is expected to die in his early twenties.

Eteplirsen works by rewriting some of the genetic code that is linked to the disease. If Max’s improvement is repeated in other patients in the trial who are receiving the drug and not the placebo, it is likely that in a few years this treatment will be revolutionizing the prognosis for Duchenne sufferers and offering hope to many of the 1 in 3600 boys who are affected by the disease.

In the meantime, patients like Austin are denied treatment, on the grounds that the drugs have not been tested- in order to protect him from unknown side effects and complications, and to test its efficacy scientifically. Yet the alternative for Austin is continuing degenerative disease, and in a few years, death.

Les Halpin, founder of Access to Medicine, and himself a motor neuron disease sufferer has argued that for those with life threatening and rare illnesses, current drug approval procedures do not work. He argues in our forthcoming paper that “for such individuals, the “risk-return ratio” is different compared to patients with more benign conditions and drug regulations should be adapted to allow such people the opportunity to try out new combinations of drugs”. He has argued for greater use of new media to track patient progress, and cites the use of the website ‘Patients Like Me’ by MND patients to track their progress on lithium treatment.

Read More »Ethics and the Limits of the Randomized Controlled Trial: Time to Enhance Access to Novel Therapies in Lethal Diseases?

We may need to end all war. Quickly.

Public opinion and governments wrestle with a difficult problem: whether or not to intervene in Syria. The standard arguments are well known – just war theory, humanitarian protection of civilian populations, the westphalian right of states to non-intervention, the risk of quagmires, deterrence against chemical weapons use… But the news that an American group has successfully 3D printed a working handgun may put a new perspective on things.

Why? It’s not as if there’s a lack of guns in the world – either in the US or in Syria – so a barely working weapon, built from still-uncommon technology, is hardly going to upset any balance of power. But that may just be the beginning. As 3D printing technology gets better, as private micro-manufacturing improves (possibly all the way to Drexlerian nanotechnology), the range of weapons that can be privately produced increases. This type of manufacturing could be small scale, using little but raw material, and be very fast paced. We may reach a situation where any medium-sized organisation (a small country, a corporation, a town) could build an entire weapons arsenal in the blink of an eye: 20,000 combat drones, say, and 10,000 cruise missiles, all within a single day. All that you’d need are the plans, cheap raw materials, and a small factory floor.Read More »We may need to end all war. Quickly.

Global Positioning Systems and Dementia: An Ethical Analysis

Sussex police have announced a scheme to fit people suffering from dementia with GPS tracking systems. These small devices will allow police to locate the wearer, and also allow the wearer to reach a 24 hour helpline by pressing a small button on the device. It has been claimed that these devices will save police time and resources, as well as reducing both the potential risk to dementia patients who go missing, and the anxiety that relatives of the missing person will feel when their loved one goes missing.

However, some parties have decried the introduction of this scheme as barbaric and inhumane. For example, Neil Duncan-Jordan, the national officer of the National Pensioners’ Convention, claimed that the scheme serves to stigmatise sufferers of dementia by equating them with people who have committed a criminal act.Read More »Global Positioning Systems and Dementia: An Ethical Analysis