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Luke Malone has published an extremely moving, disturbing, and distressing article in Medium, entitled ‘You’re 16. You’re a pedophile. You don’t want to hurt anyone. What do you do now?’ (warning: Malone’s article contains a graphic description of child abuse). The article focuses on ‘Adam’, a young man who, aged 16, was horrified to discover that he was sexually attracted to children. Disturbed by his sexual desires, and desperate to avoid acting on them, he suffered depression and initially used child pornography as an outlet for his feelings. (He subsequently stopped doing this.) Adam describes how he eventually went to see a therapist, who was unsympathetic, inexperienced in this area, and ultimately of little help. It turns out that, despite the fact that paedophilia is recognised as a mental disorder, there are major obstacles to helping people who, like Adam, are desperate to avoid harming children. Malone summarises some of the main problems: Continue reading
At present I am travelling with my immediate family, seeing less immediate family, back and forth across the US south. One thing I’ve remembered: it can be good to be a part of a close-knit group. One’s faults and mistakes are more readily understood and forgiven. One’s strengths are more readily celebrated. One’s identity is bolstered in all sorts of ways.
As we should know by now, of course, it can be bad to be a part of a close-knit group as well. In ways one’s freedom and identity can be constrained by group membership. But I’m not thinking of the effects on group members. Being a part of a close-knit group can more readily lead to immoral behaviour towards non-group members. The faults and mistakes of those outside the group are less readily understood and forgiven. The strengths of those outside the group are less readily celebrated. In general, it is easier to demonize and dehumanize out-group members.
An interesting recent paper – ‘Their pain gives us pleasure: How intergroup dynamics shape empathic failures and counter-empathic responses’ – sheds some light on these phenomena. Continue reading
Cryonics – the practice of freezing people directly after death in the hope that future medicine can resuscitate them – is controversial. However, British Columbia is the only jurisdiction with an explicit anti-cryonics law (banning advertising or sale of cryonics services), and a legal challenge is apparently being put together. The motivations for the law appear murky, but to some this is a rights issue. As Zoltan Istvan notes, “In a world where over 90 percent of the people hold religious views of the afterlife, cryonics could become a noteworthy global civil rights issue. ” Maybe the true deep problem for getting cryonics accepted is that it is a non-religious afterlife, and we tend to give undue privilege to religious strange views rather than secular strange views.
Summary: Patients potentially infected with Ebola have the right to experimental treatment outside of randomised controlled trials. Consent should be sought while they are competent if it is anticipated that they will lose competency through the disease. In the most extreme emergencies, experimental treatment could be given without consent in the public interest. However, in such extreme emergencies, such if the virus were to mutate to become very highly transmissible, selection of patients for such trials should be on a principle of justice. This would generally require selecting patients with the worst prognosis as initial subjects. Whilst the current outbreak has been declared an international health emergency, it does not warrant over-riding standard ethical principles of consent and autonomy.
WHO are convening a meeting next week to discuss the use of untested treatments for the current Ebola outbreak, which it has declared to be an international public health emergency.
Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization explained “We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,”
With a fatality rate of recent outbreaks at around 50%, and current treatments consisting of little more than rehydration, it is easy to see why this experimental approach is an attractive option. Jeremy Farrar, David Heymann and Peter Piot argued convincingly in favour of such measures.
However, there are a number of diseases which meet Dr. Kieny’s criteria of “a high fatality rate without any proven treatment or vaccine”. While Kieny is referring to infectious disease, sufferers of other diseases have campaigned for many years for access to untested medicines. Along with several colleagues, I wrote a paper on this subject with Les Halpin, who recently died from motor neurone disease, having campaigned for access to medicines for many years
The case for
I have argued that, when a patient is facing a certain death from an incurable disease, the relative safety that randomised controlled trials provide is unnecessary- especially when the payoff is a placebo group of patients who receive no benefit at all.
One common reason in support of randomised controlled trials is safety. This is true for most patients: patients for whom there are other good treatment options, or whose disease is not itself life-threatening. But for some patients, this concern is a cruel irony. Their disease is so overwhelmingly unsafe that any risk is outweighed by potential benefits. Udo Schuklenk reports Martin Delaney, a trial patient for AIDS who described the situation vividly:
It is as if I am in a disabled airplane, speeding downward out of control. I see a parachute hanging on the cabin wall, one small moment of hope. I try to strap it on, when a would be government employee reaches out and tears it off my back, admonishing, ‘You cannot use that! It does not have a Federal Aviation Administration sticker on it. We do not know if it will work’
Last month, Lord Robert Winston delivered the Physiological Society summer lecture entitled, ‘Shall we be human in the next century?’ You can watch it in full here (the stream starts working around 5”30 onwards). In the lecture, Lord Winston discusses the history and misuse of gene science and eugenics, and points to the potential resurgence of this way of thinking, made possible by advances that would allow us to genetically enhance human beings by modifying their nonpathological traits. Winston would be classified as a ‘bioconservative’ in the contemporary enhancement debate, and below I examine the case for caution that he puts forward in this lecture.
A recently released review by Australian mining magnate Andrew “Twiggy” Forrest (news article available here, full report available here) investigating training and employment for Indigenous Australians has made a controversial recommendation for the introduction of a “Healthy Welfare Card” for all recipients of welfare assistance in Australia, except for those on aged or veteran’s pensions.
The Healthy Welfare Card
The Healthy Welfare Card is the centerpiece of a new cashless system proposed by Forrest, to encourage responsible spending, reduce welfare fraud, administration costs, and increase financial inclusion. Future welfare payments, he envisions, will be directed to an account at a nominated responsible financial institution, presumably one of the Four Pillars of Australian banking. The Healthy Welfare Card is the direct debit card linked to this banking account, but with a twist – spending on “alcohol, gambling products, illicit services and instruments that can be converted to cash (such as gift cards) and…activities discouraged by government, or illegal in some places, such as pornography” will be restricted, presumably by prohibition of certain retail outlets or at the point-of-sale. The card will be usable at all Australian retail stores that accept VISA or MASTERCARD via EFTPOS facilities (except for the aforementioned), but will not permit the withdrawal of cash.
As I write this, at least 1,474 people have died in the recent outburst of violence in Gaza. A vast majority (1,410) of those are Palestinians. Throughout the last weeks, those of us who are open-minded enough to consume different types of news will have read very, very different assessments of what is happening. Some express the in other contexts quite popular opinion that we don’t measure ethics by counting dead bodies. A group of medical doctors published an open letter in The Lancet denouncing the aggression in Gaza by Israel. Washington Post published an opinion piece with the title “Moral Clarity in Gaza” which proclaimed that the situation is very clear: it is Hamas’ fault, and Israel is only exercising its rights. The New York Times made an attempt at being impartial by letting three experts on each side publish their views of what goes on. A group of prominent International Law experts wrote a joint declaration calling the international community to, among other things, use its power to stop the violence, and encouraged the UN Security Council to exercise its responsibilities and refer the situation in Palestine to the Prosecutor of the International Criminal Court. And so on. The disagreements run abysmally deep. Imprudent as it might feel to open ones mouth about a topic as infested as this, as someone working on ethics, I feel compelled to think about what ethics can do in this situation.
In 2005, the NZ Herald reported. “A man with motor neurone disease plans to starve himself to death rather than wait to die.
“Thirty-nine-year-old Andrew Morris of Hamilton has limited movement and can barely speak. He has gone public with his decision because he wants law changes to allow voluntary euthanasia.”
Such cases occur not infrequently, around the world. Last month, John Rehm took his life by dehydration. NBC News reported:
Diane Rehm and her husband John had been married for 54 years when he knew he didn’t want to live another day.
His Parkinson’s disease had become unbearable. “He just kept getting weaker,” the NPR host told NBC News. “We called in the doctor and John said to him: ‘I am ready today.’ He said ‘I can no longer use my legs, I can no longer use my arms, I can no longer feed myself.’ And knowing with Parkinson’s it is going to get worse rather than better, he said ‘I wanted to die.’” He asked the doctor for help.
The answer they got surprised and disappointed both of them. “The doctor said ‘I cannot do that legally, morally or ethically’,” Rehm said. “He said ‘I don’t disagree with your wish that you could die with the help of a physician but I cannot do it in the state of Maryland.’”
John Rehm had to deliberately die by dehydration. It took nine days.
“John said he felt betrayed,” Rehm said. He said, ‘I felt that when the time came, you would be able to help me.’”
In a recent, short commentary on the sad case of Tony Nicklinson, I argued that two basic moral rights effectively equate to a legal right to slow assisted dying. In one sense, Rhem’s doctor was wrong.
Firstly, everyone, including Mr Hamilton, has a basic right to control what goes into their bodies, including food and fluids. Everyone has a basic right to refuse to eat and drink, even if this results in their death.
Secondly, everyone has a basic right to health care, including the relief of pain and suffering. As someone is dying, they have a right to palliative care to achieve that end. This includes the administration of narcotics and sedatives, as necessary to relieve their suffering and as requested by the patient. This is so, regardless of whether their suffering is self-inflicted or not.
by Dominic Wilkinson @NeonatalEthics
Over on the Journal of Medical Ethics blog are a couple of posts that might be of interest to Practical Ethics readers.
Last week, the journal published online an article by Cristina Richie on carbon caps and IVF. She argues that the environmental costs of reproduction should lead to carbon caps on IVF, and more restrictive public access to artificial reproduction.
Iain Brasssington wrote a blog in response, ‘ARTs in a warming world‘. He wrote:
“while reproduction may be a good, it is not the only good at which persons or policies may or should aim; and there are times when two goods conflict. Neither is it too strange to suggest that there are times when a person should abandon one good because of the greater moral gravity of some other, greater, good. It’s possible that reproduction is one of those goods.”
I also wrote a blog in response to Richie, arguing that “Gaia doesn’t care where your baby comes from“. From an environmental point of view there seems little reason to place limits on artificial but not natural reproduction, or to restrict publicly funded IVF (as Richie suggests) to the “biologically infertile”.
Finally, Iain wrote a follow-up piece about conflicts of interest and ethical analysis. Some had criticised Richie’s arguments on potentially ad hominem grounds. Brassington argues (persuasively) that what matters are the arguments, not their origins.
[Feel free to comment over on the JME blog]