News outlets have been discussing a call to require health warnings on alcoholic drinks comparable to those placed on cigarette packets. Amongst other recommendations, the All Party Parliamentary Group (APPG) on Alcohol Misuse has called on political parties to include a health warning on all alcohol labels, and to deliver a government-funded national public awareness campaign on alcohol-related health issues.
If this proposal is to be implemented, it is important to note that there is an important disanalogy with placing health warnings on cigarette packaging. Whilst cigarettes always damage health to some degree, a large body of evidence suggests that moderate drinking is not only non-harmful to health but may in fact promote it. Continue reading
Epigenetics and Blaming Pregnant Women: Hasty Conclusions, Control, and Simplified Burden of Responsibility
In a recent (13.8.2014) article in Nature , Sarah S. Richardson and colleagues maintain that careless discussion of epigenetic research on how early life affects health across generations could harm women.
Authors discuss the extensive history of placing the burden of responsibility of a child’s health on the lifestyle of the pregnant mother – and the means for controlling women’s behavior. Authors describe how, for example, evidence of any fetal harm easily lead to zero-tolerance regulatory frameworks and severe informal and formal consequences (e.g. social condemnation for an occasional sip of alcohol despite the ambiguous evidence that very moderate and occasional drinking should harm the fetus), and how the “lack of emotional warmth” of the “refrigerator mothers ” was considered to be the reason to child autism as late as the 1970s. Going even more backwards in the history, various defects were attributed, for example, to the company the mother kept during pregnancy.
Last week various newspapers (see here and here) reported on a planned research study of adrenaline for patients suffering a cardiac arrest outside hospital. The PARAMEDIC 2 trial (full protocol here) involves ambulance officers randomly giving patients either the traditional resuscitation drug adrenaline, or a salt-water solution (placebo). The trial has been strongly criticized by Ruth and Lindsay Stirton, writing in the Journal of Medical Ethics.
There are two main controversial elements to the trial design. The first involves the lack of consent for involvement in the trial, the second involves the researchers’ plan not to inform families of patients who died that their loved one had been in a research trial.
The World Health Organization on Monday announced the outcome of its ethical deliberations. It found that, in certain circumstances, it was ethically permissible to use unproven drugs on Ebola patients.
It then listed ethical criteria. These included transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community.
These are laudable principles but what do they actually mean in practice? The devil is in the detail. If you broke your ankle after slipping on coffee in a hotel, and asked a lawyer if you would win a case against the hotel, you would be frustrated if the lawyer simply recited a legal principle: “the hotel owes you a duty to take reasonable care to see that you are reasonably safe in using the premises”. You want to know whether, in your case, the hotel did take reasonable care. To resolve your problem, the legal principle must be applied to the facts.
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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’