Germline genetic modification is a form of genetic engineering which involves changing the genes in eggs, sperm, or very early embryos. This type of engineering is inheritable, meaning that the modified genes would appear not only in any children that resulted from the procedure itself, but in all succeeding generations.
It is now possible to edit the human genome almost as easily as cutting this paragraph from this document and pasting it into another one, or deleting a word from it, or substituting a semi-colon for a comma.
It is only a slight exaggeration to say that new technologies, such as the CRISPR/ Cas9, have made editing or modifying the human genome just that simple.
Technology has brought the era of genome editing to our doorstep. We have the power now to shape not only our children, but all future generations.
But do we have the right? Under what conditions? What regulation? Who decides?
In a landmark move today, the American Society of Human Genetics (ASHG) issued a joint policy statement on this type of gene editing – germline gene editing – with the support of multiple professional genetics societies from across the country and the world.
In brief, the groups supported additional research in the laboratory only, but nothing that would culminate in a human pregnancy.
The ASHG position statement said that clinical application of human germline genome editing should not go forward without a compelling clinical reason, a supporting evidence base, a sound ethical justification, and a transparent process of public discussion and engagement.
They also supported additional funding and attendant oversight for germline gene editing. You can read the full position statement, ASHG Policy Statement on Human Germline Genome Editing, here.
Geisinger Professor W. Andrew Faucett was one of the representatives for the National Society of Genetic Counselors who served on the committee drafting the position statement.
“This is a powerful technology that has the potential to effect enormous changes – for good or for ill – in the human population,” Faucett said.
“The fact that the ASHG was able to form a consensus on a position statement not only among its own members, but together with multiple professional societies from around the world is quite unprecedented and should carry a lot of weight within the scientific community,” he said.
Geisinger Chief Bioethics Officer F. Daniel Davis said the ASHG position statement “demonstrates and acknowledges the need for humility in the face of this powerful new technology.”
It’s a call for a broad-based public discussion about the source of authority for decisions on the uses of this technology, he said.
Against the view that the scientific community should ultimately decide, the societies endorsing this position statement have asserted the importance of engaging the public in the debate—educating lay men and women about what is known and not known about the technology and about what’s at stake for human health and disease in efforts to advance it.
Note to Readers: Geisinger’s participation in genomic research and genomic medicine does not include any research involving germline editing of the genome.