Edit babies’ genes to wipe out inherited disease, say scientists

If the politicians are going to fund this then most doctors will be pleased, and eat their hats! This is expensive in the initial commitment, but would save millions decades later.. …. not the sort of investment politicians like, as it wont win votes at the next election. Religious objections should be over-ridden. This is a pragmatic decision. No perverse incentives should ration the option out, and certainly not on a post code basis.

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Oliver Moody reports 15th Feb 2017: Edit babies’ genes to wipe out inherited disease, say scientists

The genetic engineering of babies is the only way to stop some cases of inherited conditions such as cystic fibrosis and Huntington’s disease spreading down the generations, according to a landmark report that raises the prospect of the first human trials of the technology.

Gene editing, in which mutations are cut out of DNA with “molecular scissors”, has been used for two decades as a temporary tool to help patients’ bodies to rid themselves of diseases such as cancer, but not to make lasting changes that parents can pass on to their children.

The genetic surgery, known as germline modification, could give some couples their only hope of having healthy children, but it is fiercely opposed by many critics on the ground that it could alter the course of human evolution or be abused in attempts to create “designer babies”.

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In 2015 a research summit called for an international moratorium on this kind of research. Some scientists pushed for an outright ban on gene-editing human embryos that could never grow into children.

Yesterday, however, the US National Academies of Sciences, Engineering and Medicine concluded that clinical trials could begin once “technical challenges are overcome” and if the benefits of the therapy justified its risks. They said that researchers had to win the support of the general public, that the technique would be appropriate for only a small minority of patients and that trying to improve babies with the technology was a step too far.

The report, which has been endorsed by the Royal Society and the Wellcome Trust in Britain, marks a significant shift in scientific opinion, from distrust to cautious optimism. Sir Venki Ramakrishnan, the society’s president, said: “The hope is that we can develop safe and publicly acceptable ways to not only treat more disease but also offer parents the option of not passing on the risk of inherited diseases to their children and future generations. Our ability to do this is by no means guaranteed but today’s report will hopefully send a strong signal to scientists to continue advancing our knowledge.”

The Church of England has left open the possibility of backing the treatments but the Rev Brendan McCarthy, its national adviser on medical ethics, told The Times it would be “precipitate” to begin trials in the near future. “We do not believe sufficient debate has taken place or sufficient evidence been gathered to begin human trials,” he said.

The Roman Catholic church is implacably opposed. David Albert Jones, a spokesman for the Catholic Bishops’ Conference of England and Wales, said: “It is naive to believe that its use could be restricted to only a few serious conditions. Experience shows that once a bright line has been crossed, technology extends to more and more uses further and further from the original proposal.”

Do we dare to change the letters in our own book of life? Until a few years ago this question would have been wild speculation (Oliver Moody writes).

Now, thanks to a series of scientific advances — most notably the discovery of a DNA-cutting enzyme known as CRISPR/Cas9 — it has a tang of urgency.

The US national academies’ report on making changes to the gene pool is 261 pages long and very careful. It maps out a thicket of ethical and practical problems, yet this is the first time human germline editing has been described by a weighty scientific organisation as a plausible and desirable prospect. Mostly, though, the report is significant precisely because of the number of caveats it contains: this is the sound of scientists gearing up for the debate of their lives.

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This entry was posted in A Personal View, Patient representatives, Perverse Incentives, Political Representatives and activists, Post Code Lottery, Professionals, 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.

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