At last – common sense on the right to die with agreement of Dr and Family. The cost implications of prevention of genetic diseases are a barrier too high for most countries..

The decision on assisted dying is to be welcomed, as is the news that diseases such as this could be edited out of society eventually using Crispr, but there is a cost, and patenting of the processes may mean costs are too high for many nations/systems. The news in the recent edition of the New Scientist is that a leukaemia gene can be edited for the price of $475,000 per patient. This blows NICE life – years valuation out of the water… But on the other hand, rich families will be able to afford the treatments… At last – common sense on the right to die with agreement of Dr and Family. But the cost implications of prevention, along with the ethical dilemmas and the religious rights objections, mean that helping the patient by “putting them at the centre of your concern”, will still be the main problem for doctors for decades to come. Even the insurers might object.

Image result for rich poor health cartoon

The Telegraph 20th September: Euthanasia laws to give terminally ill patients right to die

The Telegraph 21st September 2017: Right-to-die cases do not need to go to court, judge rules 

A judge has made a landmark ruling that legal permission will no longer be required by a court before life-supporting treatment is withdrawn from patients suffering from severely debilitating illnesses, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for more than 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter plus doctors caring for her all agreed that life support treatment should end……

The Times&Star: Judge’s decision in life-support treatment case was ‘landmark’ ruling 

I have a 50% chance of developing Huntington’s Disease. (Self.com)

Nicholas Hune-Brown 7th April 2017: Assisted suicide in Canada: what doctors think

Francis Gibb 21st March2017: Let me choose my death, terminally ill lecturer tells judge

Rosemary Bennett Jan 7th: Lecturer with months to live seeks right to assisted death

Daniel Finkelstein July 7th: We should all be free to choose how we die

June 19th 2016: Doctors ponder ending ban on assisted dying –

The case against: The Times letters July 2014: Assisted dying debate must be thorough – there are many details in the proposed assisted-dying legislation which need careful scrutiny

Sir, The crux of the debate on assisted suicide is whether it is possible to grant some people the right to assistance in suicide without exposing others to subtle, malicious pressure to exercise it.
In 2011 Lord Falconer’s commission stipulated that a safe assisted-suicide framework required, first, safeguards “to ensure that the choice of an assisted death could never become an obligation and that a person could not experience pressure from another person to choose an assisted death without the abuse being detected”. Second, there had to be provision of “the best end of life care available”, including staff who would fully investigate the circumstances and motivations of any person seeking an assisted death and alternative options for treatment and care”.
In her book about the treatment of the elderly, Not Dead Yet (2008), Baroness Neuberger reported that in the UK 500,000 elderly people were being abused, two-thirds by relatives or friends. The Stafford Hospital scandal revealed that abuse of vulnerable patients is not limited to amateurs but extends to healthcare professionals.
So, we have no reason to suppose that we can “ensure” the absence of undue pressure to opt for assisted suicide and the presence of compassionate staff. Indeed, there is good empirical reason to doubt that such things can ever be guaranteed.
Judging by his own commission’s criteria, then, Lord Falconer’s Assisted Dying bill is, while well meaning, dangerously imprudent.

The Case for: Why the Assisted Dying Bill should become law in England and Wales

About time too – Doctors ponder ending ban on assisted dying

The Times 21st September 2017: Judge changes rule on ending life support for terminally-ill

judge in a specialist court has made a landmark decision that will affect the relatives of terminally-ill people, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter and her doctors all agreed that life support treatment should end.
Mr Justice Jackson said that judges should not be required to make rulings in similar cases, where relatives and doctors were in agreement and medical guidelines had been followed.
Mr Justice Jackson said he could understand why the woman’s mother and doctors had asked for a ruling. But, he said, in a written ruling : “In my view it was not necessary as a matter of law for this case to have been brought to court.”

He published the ruling on Wednesday and said the woman had now died.
Specialist lawyers at Irwin Mitchell had represented the woman’s mother. They described Mr Justice Jackson’s decision as a landmark.

Oliver Moody reports in The Times: Pioneering scientists edit genes in embryos to stop inherited diseases

Genetic engineers have eradicated disease-carrying DNA from human embryos in a breakthrough that heralds a new era in medicine.

The achievement could lay the groundwork for doctors to eliminate hundreds of inherited illnesses such as Huntington’s disease, cystic fibrosis and sickle-cell anaemia with a single, permanent change to a family’s bloodline.

<img class=”Media-img” src=”//www.thetimes.co.uk/imageserver/image/methode%2Ftimes%2Fprod%2Fweb%2Fbin%2Fb9051a58-77aa-11e7-b7e4-cc0394df39fd.png?crop=480%2C720%2C-0%2C-0″ alt=””>

While implanting altered embryos in the womb is against the law in the UK and many other countries, some scientists forecast that the technology will become acceptable if the benefits of preventing these conditions outweigh their practical and ethical problems.

There are about 10,000 diseases that are caused by individual mutations and could in theory be fixed with the treatment, which is known as germline gene editing because it involves using chemical scissors to snip harmful DNA out of an embryo’s genome.

Biologists in the US, China and South Korea used a powerful form of the technique called Crispr/Cas9 to cut out the gene that causes one of the most common of these conditions, hypertrophic cardiomyopathy (HCM), from sperm cells as they fertilised 52 eggs from a single healthy woman.

This incurable disease, which affects one in 500 people, thickens and stiffens the wall of the heart, sometimes leading to shortness of breath, palpitations or abnormal rhythms.

Findings published in the journal Nature show that scientists were able to get rid of the mutation that causes about 40 per cent of HCM cases by injecting a tailored version of Crispr/Cas9 into the woman’s eggs at the same time as they introduced the mutation-bearing sperm.

It is the first time that researchers have edited the genes of embryos and then seen them develop normally, partly because the embryos appear to be able to repair their DNA cleanly by using the egg’s genome as a template.

Attempts carried out in China over the past two years failed because they resulted in so-called mosaic embryos in which some cells had been fixed while others carried the gene.

There is a long way to go before the treatment can be used in IVF clinics. Ethical questions aside, the findings will need to be repeated in eggs from other women, while politicians and regulators will need further evidence that it is safe before they can consider legalising germline editing in the real world.

Even then, it will play second fiddle to pre-implantation genetic screening, where doctors examine the DNA of a couple’s embryos to see if any are free of mutations. In practice gene editing would be most useful for would-be parents who cannot produce enough healthy embryos, particularly if they carry dominant gene-linked disorders such as Huntington’s disease, HCM, Marfan syndrome and neurofibromatosis, which makes its carriers prone to cancers of the nervous system.

Peter Braude, emeritus professor of obstetrics and gynaecology at King’s College London, who was not involved in the study, said: “The possibility of germline genome editing has moved from future fantasy to the world of possibility, and the debate about its use, outside of fears about the safety of the technology, needs to catch up.”

Designer babies — the last taboo
Scientists heave a collective sigh when they hear the phrase “designer babies”. The words conjure up an elite race of children whose genes have been customised with methods that are as technically implausible as they are ethically fraught.

This is not what most experts fear. The real risk is that one of these days, in a fertility clinic beyond the intense scrutiny that attends every step of embryo research in most western countries, doctors will quietly slice an inherited disease out of a few embryos’ genomes and nine months later announce the birth of the world’s first gene-edited baby.
We know this because we have been here before. Last year John Zhang, a US doctor, used a different but scarcely less controversial technique known as mitochondrial replacement to create a “three-parent” baby in Mexico.
The global scientific establishment was appalled, particularly as the UK was still putting the finishing touches to a pioneering system for licensing this kind of experiment after more than a decade of thorough debate.
The trouble is that no matter how carefully we try to control the science, there will always be places where even the best-laid laws cannot reach. There is not much that experts can do to hold back their colleagues if they are determined to defy international convention, particularly if they are prepared to do so in countries whose regulations are vaguer or more permissive than those in Britain and the US.
This is true not only of gene editing but also of many ethical frontiers that are being challenged by the breakneck pace of biological discovery.
Sandy Starr, of the Progress Educational Trust, a biomedical charity, said the technology needed to be considered alongside projects such as the creation of animals that contain human cells and the generation of sperm and eggs in a dish.
“All of these are potentially exciting areas of research,” he said. “They all require careful regulation, and they certainly require the widest public and international debate before we consider permitting any clinical applications.
“Of course it’s always possible that someone unscrupulous will jump the gun, go jurisdiction-shopping, and travel somewhere to use an experimental medical technique in an unethical way. Even if they do, and even if they evade legal judgment, we can still subject them to our own moral judgment and find them wanting. Indeed, it becomes all the more important for us to do so.”

Mallory Locklear 1st September 2017: Pioneering gene therapy approved for leukaemia in the US

Parents want end to ban on testing of newborns for fatal (genetic) diseases

 

Image result for rich poor health cartoon

Advertisements
This entry was posted in A Personal View, Good News, Political Representatives and activists, Rationing, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s