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International genetics groups advocate germline CRISPR research

7 August 2017
Appeared in BioNews 912

Research into human germline genome editing should continue, recommends an international group of 11 human genetics organisations.

However, such research should not culminate in human pregnancy until important scientific and ethical questions have been answered.

The joint policy statement comes a day after a report in Nature of the successful correction of a disease-causing gene using the CRISPR/Cas9 genome editing technology in a human embryo, potentially bringing clinical germline editing in humans a step closer.

Although in support of research into editing human embryos or gametes, the statement warns that future clinical application should proceed only if there is a compelling medical need, and sufficient evidence to support its safe and effective use.

Several ethical questions are also highlighted, including potential unknown consequences for future generations, concerns regarding eugenics, so-called 'designer babies', and access to the technology.

'While germline genome editing could theoretically be used to prevent a child being born with a genetic disease, its potential use also raises a multitude of scientific, ethical, and policy questions - these questions cannot all be answered by scientists alone, but also need to be debated by society,' said Dr Derek Scholes, director of science policy for the American Society of Human Genetics.

The statement also supports public funding of in vitro germline genome editing research, which is currently not provided. Professor Kelly Ormond, one of the statement's lead authors, emphasised this point, saying, 'We felt it was really important to say that we support federal funding for this kind of research'.

The American Society of Human Genetics initiated the preparation of the statement, but was keen to include other organisations from around the world due to the global impact of the work, and the fact that research is carried out in many different countries, each with different regulatory frameworks. These included UK organisations the Association of Genetic Nurses and Counsellors and the British Society for Genetic Medicine.

Professor Frances Flinter, consultant in Clinical Genetics at Guy's and St Thomas' NHS Foundation Trust, said: 'The statement is timely and well balanced. There are so many uncertainties and potentially serious risks that it would be extremely irresponsible to embark on any form of germline genome editing that results in a human pregnancy at present. Further research, however, performed in a strictly regulated environment, as in the UK, may yield useful information about potential clinical applications.'

2 December 2019 - by Isobel Steer 
When we think of designer babies, we may think of genome-edited babies with their DNA cut and spliced, perhaps using CRISPR...
29 January 2018 - by Hannah Tippett Simpson 
The US National Institutes of Health (NIH) has announced its intention to grantĀ US$190 million for genome editing research...
21 August 2017 - by Dr Rachel Huddart 
A new survey suggests that Americans are becoming more accepting of the use of genome editing in humans, and there is strong support for moreĀ public involvement in discussions on the technology...
25 January 2016 - by Antony Starza-Allen 
We report from the fourth session of annual conference of the Progress Educational Trust, titled 'Germline in the Sand: The Ethics and Law of Engineering the Embryo', which discussed the ethics of human embryo genome editing...
30 November 2015 - by Dr Silvia Camporesi and Dr Lara Marks 
It is important to engage the public in the debate about genome editing as early as possible, and in a way that is as open as possible, to make sure that all possible voices are included...
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...
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...
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