Int’l group urges “cautious but proactive” approach to gene editing

By on August 4, 2017


This is the American Journal of Human Genetics, 2013-11-07 front cover. (Photo by WP:NFCC#4, fair use)
This is the American Journal of Human Genetics, 2013-11-07 front cover. (Photo by WP:NFCC#4, fair use)

WASHINGTON, Aug. 4—  An international group of 11 organizations with genetics expertise on Thursday issued a joint policy statement, urging a “cautious but proactive approach” to germline gene editing, an emerging field with enormous potential to treat inherited diseases and even cancer.

The policy statement, published in the American Journal of Human Genetics, came a day after researchers from the United States, South Korea and China reported safely repairing a disease-causing gene in human embryos by using a gene-editing tool called CRISPR-Cas9.

“At this time, it is inappropriate to perform germline gene editing that culminates in human pregnancy,” said the policy statement.

However, “there is currently no reason to prohibit in vitro (outside of a living organism) germline genome editing research, with appropriate oversight and consent, or to prohibit public funding for such research”, it wrote.

Further, the group agreed that before any future clinical application of germline gene editing takes place, there should be preconditions, such as a compelling medical rationale to use this approach.

CRISPR-Cas9, first introduced in 2013, has quickly become widely used in genetics research due to the ease with which it can be customized and its effectiveness across cell types and species.

There is considerable interest in using this tool in somatic cells — to develop cell-based therapeutics, for example — as well as in germline cells, the focus of this statement and an ethically more complex issue because of potential effects on not just the treated individual but also future generations.

“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,” Derek Scholes, director of science policy for the American Society of Human Genetics (ASHG), said in a press release.

“These questions cannot all be answered by scientists alone, but also need to be debated by society,” Scholes said.

Prof. Frances Flinter, consultant in clinical genetics of Guy’s and St Thomas’ NHS Foundation Trust in Britain, said the policy 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,” Flinter said.

“Further research, however, performed in a strictly regulated environment, as in the UK, may yield useful information about potential clinical applications.”

The policy statement was jointly authored by the ASHG, the Association of Genetic Nurses and Counsellors, the Canadian Association of Genetic Counsellors, the International Genetic Epidemiology Society, and the National Society of Genetic Counselors.

It was also endorsed by the American Society for Reproductive Medicine, the Asia Pacific Society of Human Genetics, the British Society for Genetic Medicine, the Human Genetics Society of Australasia, the Professional Society of Genetic Counselors in Asia, and the Southern African Society for Human Genetics.