On Monday, London will see the world’s first artificial meat burger cooked and tasted, by Professor Mark Post of Maastricht University. Artificial meat stops cruelty to animals, is better for the environment, could be safer and more efficient, and even healthier. We have a moral obligation to support this kind of research. It gets the… Read More »Press Release: Ethical Meat
30 July. This blog is an extended version of the post ‘Vaccines: All or Nothing’ (posted 29 July).
A vaccine which would protect children from Meningitis B has been rejected by the Joint Committee on Vaccination and Immunisation (JCVI) as not cost effective, despite the fact the cost is not yet known.
The Department of Health’s director of immunization explained:
“This is a very difficult situation where we have a new vaccine against meningitis B but we lack important evidence. We need to know how well it will protect, how long it will protect and if it will stop the bacteria from spreading from person to person.
“We need to work with the scientific community and the manufacturer to find ways to resolve these uncertainties so that we can come to a clear answer.”
A call for more research is a standard answer to many dilemmas in healthcare, though perhaps one which is easy to ignore. As far as we know there are no current plans to ensure that this research takes place but the vaccine has already been found to be safe, and according to the BBC, “tests have suggested the vaccine is effective against 73% of the different strains of the disease”.
Resource allocation is an inevitable part of any health care system, and perhaps especially so in the NHS. Whilst we would like to provide all available treatments, prioritizing according to effectiveness and cost is necessary, though the exact method of calculating this (currently Quality Adjusted Life Years, or QALYs) is of course under intense debate and scrutiny.
In the meantime, children continue to suffer avoidable, lifelong disability due to infection with Meningitis B. I argue with Lach de Crespigny in a forthcoming paper on homebirth that actions (or failures to act) taken today which cause harm in the future are as wrong as if that harm were realized today. The plight of these children and adolescents should not be ignored.
Put simply, if you could prevent a child from getting brain damage, now or in the future, at little cost to you, you ought to perform that act.
One possible way forward would be to allow parents to pay for the vaccination of their child, at whatever price the company sets, just as holiday vaccinations can be provided by the NHS at a cost to the patient. Vaccinated children could be monitored and their data recorded. Not only would this generate the data that would establish how high up funding agendas this vaccine should be, but some individual children would be prevented from suffering this deadly and debilitating disease. To increase take up, the company would be under market pressure to keep the price as low as possible.
Read More »The Ethics of Private Payment for Health Care: The Example of Vaccination
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
Direct to consumer genetic testing is growing rapidly; 23andMe has hired Andy Page to help the company scale – especially since it aims at having one million members by the end at the year (currently, since its launch, 23andMe has tested over 180,000 people around the world). While most ethics discussion about personal genomics has focused on the impact on individuals (is the risk of misunderstanding or bad news so bad that people need to be forced to go via medical gatekeepers or genetics counsellors? is there a risk of ‘genomization’ of everyday health? and so on), the sheer number of tested people and their ability to compare results can result in interesting new ethical problems, as a friend found out.
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?
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.
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.
In this special Enhancement seminar, visiting speakers Rob Sparrow and Chris Gyngell discussed two aspects of enhancement. You can hear the podcast here (mp3). Rob Sparrow on ‘Enhancement and Obsolescence: Avoiding An “Enhanced Rat Race”‘: A claim about continuing technological progress plays an essential, if unacknowledged, role in the philosophical literature on “human enhancement”. Advocates for… Read More »Enhancement: Rat Race or Supermarket? (Podcasts)
On 9 May 2013, Salla Sariola, from ETHOX, gave a fascinating talk at the St Cross Ethics Seminar, based on work done collaboratively with Bob Simpson (Durham). The presentation focused on the large number of self-poisonings which have been taking place in Sri Lanka, often using lethal agricultural pesticides and herbicides unavailable in many developed countries. This presentation is now available as a podcast at the bottom right of the Oxford Uehiro Centre main webpage.Read More »‘Precarious (Bio)ethics: Research on Poisoning Patients in Sri Lanka’
By Charles Foster and Jonathan Herring
Scene 1: An Intensive Care Unit
Like many patients in ICU, X is incapacitous. He also needs a lot of care. Much of that care involves needles. Late at night, tired and harassed, Nurse Y is trying to give X an intravenous injection. As happens very commonly, she sticks herself with the needle.
Nurse Y is worried sick. Perhaps she will catch HIV, hepatitis, or some other serious blood-borne infection? She goes tearfully to the Consultant in charge.
‘Don’t worry’, he says. ‘We’ll start you on the regular post-exposure prophylaxis. But to be even safer, we’ll test some of X’s blood for the common infections. I doubt he’ll be positive, but if he is, we’ll start you straight away on the necessary treatment. We needn’t take any more blood: there are plenty of samples already available.’
A sample of blood is submitted for analysis. Read More »Non-consensual testing after needlestick injury: A legal and ethical drama
