Host of genetic research groups issue backing for inheritable human gene editing

A group of 11 organisations spanning five continents have issued a policy statement in support of current efforts to edit human germline genomes – that is, genes which passed down from parent to child.

The statement, published today in The American Journal of Human Genetics, said that the organisations support publicly funded in-vitro research into germline genome editing, which could eventually be used to eliminate devastating inherited diseases.

However, they stopped short of supporting research that would lead to a human pregnancy, arguing that at this stage it would be inappropriate to undertake.

“Our workgroup on genome editing included experts in several subfields of human genetics as well as from countries with varying health systems and research infrastructure,” said statement lead author Kelly E Ormond, professor of genetics at Stanford University.

“Given this diversity of perspective, we are encouraged by the agreement we were able to reach and hope it speaks to the soundness and wider acceptability of our recommendations.”

A depiction of the now widespread CRISPR-CAS9 gene editing complex, which enables DNA to be edited. Image courtesy of Image courtesy of Ian Slaymaker, Broad Institute

Germline genome editing has only been even hypothetically possible very recently, with the development of the CRISPR/Cas9 genome editing tool in 2013. Allowing precise customisation of genes, it creates whole new possibilities for genetic research, particularly in humans.

However, while scientists feel confident of the technological and scientific prospects, the technology raises significant ethical issues, particularly in germline genomes, where any changes could have an impact for generations.

As a result, the scientists argue that there needs to be strong public discussion about the ethical issues, as well as clear rationale, evidence and ethical justifications for any future research in the area.

“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,” said Derek T Scholes, ASHG director of science policy. “These questions cannot all be answered by scientists alone, but also need to be debated by society.”

“As basic science research into genome editing progresses in the coming years, we urge stakeholders to have these important ethical and social discussions in tandem,” added Ormond.

Conventional two-stranded DNA

As a result, it is likely that we will see far more public discussion before the first gene-edited babies come anywhere close to being conceived.

The statement was authored by the American Society of Human Genetics (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.

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