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Empathy ethics: How to get a lung for your child

Empathy ethics: How to get a lung for your child

By Julian Savulescu & Brian D. Earp

[updated version – as of 17 April 2016]

Sarah Murnaghan is a 10-year-old from Pennsylvania. Suffering from cystic fibrosis, she was likely to die without a lung transplant. Her situation was deteriorating. But because of a rule that says that children under the age of 12 have the lowest priority for adult donor lungs, Sarah would have to wait for another child’s lungs to become available, a much rarer occurrence.

Sarah’s parents sprang into action. They got the attention of members of congress and the media. They shared Sarah’s story on social networking sites, showing pictures of their daughter in the hospital bed. They said that the “Under 12” rule was discriminatory against children, and got a federal judge to agree. So, with the help of a court order temporarily preventing the enforcement of the Under 12 rule, Sarah got a second chance at life. An adult lung match became available, and Sarah is now recovering from transplant surgery.

It’s a story with a happy ending—depending upon how you tell it. Certainly the news is good for Sarah. Yet as Sarah’s mother acknowledged in a post on Facebook, “We … know our good news is another family’s tragedy.”

But who are those families? What are their stories? What are the names of those who will die—or who have already died—without a lung transplant of their own?

What this case illustrates is something we might call “empathy ethics” – pushing one’s own story, or that of one’s family member, into the moral spotlight in order to trigger an empathic response. Since ordinary human beings—from news anchors to congressmen to federal judges—are more likely to feel empathy for known individuals with compelling narratives of suffering, they can become motivated to bend the rules in favor of those specific individuals whose stories best capture their attention.

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Skin switching, implicit racial bias and moral enhancement

A recent study has shown that a person’s implicit racial bias can be reduced if she spends some time experiencing her body as dark-skinned. Psychologists in Spain used an immersive virtual reality technique to allow participants to ‘see’ themselves with a different skin colour. They measured the participants’ implicit racial bias before and after the intervention, finding that the embodiment of light-skinned individuals in a dark-skinned virtual body at least temporarily reduced their implicit bias against people who are coded as ‘out-group’ on the basis of skin colour.

Implicit racial bias is an evolved, unconscious tendency to feel more positively towards members of one’s own race (one’s ‘in-group’) than towards members of a different race (members of an ‘out-group’). The bias can be (and was in this study) measured using a version of the implicit association test, which requires participants to quickly catagorise faces (black or white) and words (positive or negative) into groups. Implicit bias is calculated from the differences in speed and accuracy between categorising (white faces, positive words) and (black faces, negative words) compared to (black faces, positive words) and (white faces, negative words). Crucially, implicit racial bias has been shown to be uncorrelated with explicit racial bias – self-reports of negative racial stereotypes. This means that even those who are not consciously averse to people from other racial groups often demonstrate a deep-seated bias against them as an evolutionary hangover. Hearteningly, the authors of the study started from the idea that encoding people by race may be a reversible by-product of human evolution used to detect coalitional alliances. What their study confirmed is that immersive virtual reality provides a powerful tool for placing people into a different race ‘coalition’ by changing their body representation and consequently reducing their implicit aversion to the racial characteristics there represented.Read More »Skin switching, implicit racial bias and moral enhancement

A WHITE MAN’S COURT

Is it a White Man’s Court?  I went to a talk recently in which the International Criminal Court, the ICC, was accused of racial bias.  The evidence seems pretty damning.  Virtually no non-African has been targeted by the Court.  Yet nobody believes Africa is the only continent in the world to experience grave war crimes.  The Chairman of the African Union, the Ethiopian Prime Minister, Hailemariam Desalegn, recently made a similar claim:  he talked of the ICC “hunting” Africans. Read More »A WHITE MAN’S COURT

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.

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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.’

Cry havoc and let slip the robots of war?

Stop killer robots now, UN asks: the UN special rapporteur on extrajudicial, summary or arbitrary executions Christof Heyns has delivered a report about Lethal Autonomous Robots arguing that there should be a moratorium on the development of autonomous killing machines, at least until we can figure out the ethical and legal issues. He notes that LARs raise far-reaching concerns about the protection of life during war and peace, including whether they can comply with humanitarian and human rights law, how to device legal accountability, and “because robots should not have the power of life and death over human beings.”

Many of these issues have been discussed on this blog and elsewhere, but it is a nice comprehensive review of a number of issues brought up by the new technology. And while the machines do not yet have fully autonomous capabilities the distance to them is chillingly short: dismissing the issue as science fiction is myopic, especially given the slowness of actually reaching legal agreements. However, does it make sense to say that robots should not have the power of life and death over human beings?

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Podcast: David Nutt, ‘The current laws on drugs and alcohol – ineffective, dishonest and unethical?’

Professor David Nutt argues in this podcast of his lecture, that whilst the use of the law to control drug use is long established, it remains unproven in efficacy. Although seemingly obvious that legal interdictions should work there is little evidence to support this assertion. So for example cannabis though illegal is at some time used by nearly half of the population. Similarly drugs like ecstasy and amfetamine are widely used by up to a million young people each weekend. This use is underpinned by a demand for the pleasurable experiences that the drugs produce, and also by a paradoxical desire by some people to break the law.

As well as being ineffective for many users prohibition of drugs often leads to perverse magnification of harms and drug use. When the “English” approach to heroin use i.e. prescription to addicts was abolished in the 1970s on moral grounds heroin use increased tenfold in a few years as addicts were forced to become dealers so getting more people addicted to fuel their income. The banning of alcohol in the 1920s in the USA lead to huge criminal expansion of alcohol sales the perpetrators of which turned to other drugs once prohibition was repealed: a legacy that we still experience today.

Moreover the un-scientific and arbitrary distinct between legal drugs particularly alcohol and tobacco and “illegal” drugs also has perverse negative consequences. As well as bringing the scientific foundation of the drug laws into disrepute it also precludes the use of possibly life-changing drugs for those who might benefit from them as treatments: examples of these include cannabis for Multiple sclerosis, MDMA [ecstasy] for PTSD and psilocybin for cluster headaches.

For these reasons Nutt argues that there are serious ethical implications for a simplistic prohibitionist approach to drugs and suggest alternative strategies that might be used.

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Podcast: Folk Psychology, the Reactive Attitudes and Responsibility

In this podcast of her recent lecture, Professor Jeanette Kennett explores the connections between the folk psychological project of interpretation, the reactive attitudes and responsibility, (podcast ). The first section argues that the reactive attitudes originate in very fast and to a significant extent, non-voluntary processes involving constant facial feedback. These processes allow for smooth… Read More »Podcast: Folk Psychology, the Reactive Attitudes and Responsibility

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?