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New report on ethics of “editing” babies welcomed by cystic fibrosis patient


By Xanthe Palmer

A 21-YEAR-OLD cystic fibrosis patient has welcomed a new report into the ethics of gene editing.

The Nuffield Council of Bioethics has recommended urgent work is carried out to further address the moral issues around altering human embryos – a technique that could prevent genetic diseases.

But in its ethical review of genome editing, published on September 30, the independent advisory body also admits there are strong arguments in favour of it.


Cystic fibrosis patient Luke Palferyman, 21.

Luke Palferyman from Barnsley is one of 10,800 people in the UK born with cystic fibrosis. He has to take several different kinds of pills a day and use a nebuliser and do exercises to clear his airways.

He said: “Having this disease is so draining, it’s a full time job and I wouldn’t wish anything like this on my worst enemy.

“Gene editing is definitely something I would consider as a parent.”

But the technique, known as CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) has attracted controversy with the worries it raises about “playing God” and “designer babies”.

The report said: “Research undoubtedly has a very long way to go before any application of this sort could be contemplated and, in the UK at least, the transfer of an edited embryo to a woman is currently prohibited by law.

“Nevertheless, such applications are theoretically possible and there are strong moral arguments for them, at least for limited purposes, as well as against.”

The Cystic Fibrosis Trust also welcomed the report. It is investing £750,000 to help research how CRISPR can ‘fix’ the genes that cause cystic fibrosis.

People with the condition have difficulty breathing, eating and digesting because of mucus blocking airwaves and digestive system. This is caused by a gene not allowing salt and water into cells.

The new editing tool would help the faulty gene function properly, making the lives of people like Luke much easier.

A spokesperson from the Cystic Fibrosis Trust said: “We are delighted to support these ground-breaking projects. Gene editing and stem cell research have huge potential for the mission to beat cystic fibrosis for good. This is a great example of the Trust’s commitment to cutting-edge science.”

Professor Karen Yeung, chair of Nuffield Council on Bioethics’ working party on human reproductive applications, said in the report: “Genome editing is a potentially powerful set of techniques that holds many future possibilities, including that of altering certain genetic features at the embryonic stage that are known to lead to serious and life-limiting disease.”

One in every hundred people globally are thought to be affected by one of 4,000 single gene conditions, such as cystic fibrosis.

However, with the use of CRSPR changes can be made to DNA at the early stages of an embryo.

This would mean people who would otherwise suffer with life-long conditions can live disease free.

A major issue highlighted by the council with this kind of gene editing is that it could cause unintended effects in the child by changing its genes, which could be irreversible.

Sarah Robson, communications manager at the Nuffield Council on Bioethics said: “In human reproductive applications, people have concerns about the implications of making genetic changes that will be passed on to future generations, and the possibility of the techniques being used for purposes beyond disease avoidance, to enhance resistance to disease or to confer other desirable characteristics.”

The Council said it will now set up two expert working parties “to develop practical conclusions and recommendations in response to the issues and questions raised in this initial stage of the project”.

Their findings and recommendations will be reported in 2017.

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