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US scientists to write CRISPR 'rulebook'

26 May 2015

Scientists will gather in the USA later this year to produce ethical guidelines on the use of human gene-editing techniques such as CRISPR/Cas9.

Two major not-for-profit US organisations, the National Academy of Sciences (NAS) and the Institute of Medicine (IoM), are planning an international summit in the Autumn as part of an attempt to agree clinical and ethical standards on the future use and development of the technology.

CRISPR/Cas9 enables the human genome to be altered with extreme precision by 'cutting' both strands of the DNA in the double helix, inserting copied DNA and deleting defective genetic material.

Gene-editing techniques could be used to edit almost any gene and treat genetic conditions, but they raise ethical issues.

Renewed focus on the appropriate use of gene-editing came after Chinese scientists confirmed last month that they used CRISPR/Cas9 to change the DNA of human embryos (see BioNews 799). Prior to this, the technology had only been successfully applied in human adult DNA and mice.

In a joint statement, the presidents of NAS and IoM, Dr Ralph Cicerone and Dr Victor Dzau, confirmed that the focus of the initiative will be 'the scientific underpinnings, clinical, ethical, legal, and social implications of human gene editing.'

They state: 'Recent experiments to attempt to edit human genes have raised important questions about the potential risks and ethical concerns of altering the human germline. Future advances are likely to raise new questions.'

The NAS convened the Asilomar summit in 1975 to debate the use of recombinant DNA in research, giving rise to guidelines and federal regulations on the issue. The NAS committee hopes this meeting can do the same, and will provide scientific communities around the world with 'a comprehensive understanding of human gene editing and its implications.'

Dr Francis S. Collins, director of the US National Institutes of Health (NIH) confirmed 'the concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives, and has been viewed almost universally as a line that should not be crossed.'

Germline modification of human embryos - gene editing which includes changes to gametes that will carry through to future generations - is considered by some to be eugenic. In the USA, it is legal in most states although it cannot be funded by the US Government after the NIH refused to fund such research for ethical reasons (see BioNews 800).

Scientists including co-discoverer of the technique, Professor Jennifer Doudna, have called for a worldwide moratorium on the use of CRISPR/Cas9 in human embryos and germ cells (reported in BioNews 795).

Dr Marcy Darnovsky, director of the Center for Genetics and Society in Berkeley, California has criticised the Asilomar conference model. Speaking to Nature News, she described it as 'an effort at fending off any sort of binding policy in favour of self-regulation.' Instead, Dr Darnovsky wants the scope of discussion on gene-editing technology widened to include politicians, religious groups and human rights organisations.

National Academy of Sciences and National Academy of Medicine Announce Initiative on Human Gene Editing
National Academy of Sciences |  18 May 2015
Scientists to thrash out rules on genetically modified humans
The Independent |  20 May 2015
US science academies take on human-genome editing
Nature News |  18 May 2015
U.S. science leaders to tackle ethics of gene-editing technology
Reuters |  18 May 2015
6 February 2017 - by Rachel Siden 
The American College of Medical Genetics and Genomics has published a statement recommending caution over the clinical application of genome editing...
12 October 2015 - by Dr Silvia Camporesi and Dr Lara Marks 
The UNESCO International Bioethics Committee has released a statement reaffirming an earlier moratorium called by a group of US scientists on the use of CRISPR/Cas9 in human embryos. We argue that the current framing of the debate in terms of dystopic or imagined futures is too narrow and constrains the boundaries of the debate to germline applications...
14 September 2015 - by Kirsty Oswald 
The influential Hinxton group has said that the genetic modification of human embryos should be allowed...
7 September 2015 - by Dr Katie Howe 
A consortium of medical research funders and learned societies has called for further research into the genetic modification of human cells, as well as a national debate into the ethics of such techniques...
6 July 2015 - by Cait McDonagh 
The US Congress has released a bill that would prohibit the Food and Drug Administration from spending any money in relation to projects that involve editing the human genome...
18 May 2015 - by Ari Haque 
Patents for the gene-editing technology, CRISPR/Cas9, are the subject of a dispute between scientists at University of California, Berkeley and the Broad Institute of MIT and Harvard....
11 May 2015 - by Dr Calum MacKellar 
The short article by Robin Lovell-Badge entitled 'Editing human embryos' addressing the work of Junjiu Huang and colleagues in China on gene editing in human embryos - such as the use of the CRISPR/Cas9 system - raises a number of ethical questions....
5 May 2015 - by Ayala Ochert 
The US National Institutes of Health has issued a firm statement that it will not fund any research involving gene-editing technologies in human embryos...
27 April 2015 - by Ayala Ochert 
Chinese scientists report the first-ever genetic modification of human embryos using the CRISPR/Cas9 gene-editing technique, confirming rumours that these highly controversial experiments were underway...
23 March 2015 - by Dr Meghna Kataria 
Scientists have called for a worldwide moratorium on the use of the gene-editing technique CRISPR/Cas9 in human embryos and germ cells...
Comment ( - 27/05/2015)
It is commendable that the NAS and IoM are kick starting discussions at this early stage of development of CRISPR. This technology could have far reaching consequences, and we support the call for a more diverse group to take part in discussions  - this is a necessity that will only enhance the debate. It is a shame that the piece omits to mention patients. These are the people after all who are most likely to be impacted and they ought to be firmly on the invitation list.
Amy Hunter, Genetic Alliance UK
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