Gene-editing tools should eventually be used to modify human DNA to prevent diseases from being inherited, the US National Academy of Sciences has said, but the group warned against using such techniques to create so-called ‘designer babies’.
In a much anticipated report, released by the Human Genome Editing: Science, Ethics, and Governance group, the committee of scientists, entrepreneurs, ethicists and patient advocates advised against tools like CRISPR-Cas9 being used to make ‘enhancements’ to the human genome. This was, however, caveated with the statement that such enhancements shouldn't be made “at this time”, suggesting there could be wiggle room in the future.
Like the recent recommendation in the UK to allow an IVF technique that replaces faulty genetic information from the mother with a third person’s healthy DNA, the report advises genome editing only be used for the most serious cases, where there are no other options, and only under strict guidelines and oversight. It also repeatedly called for public engagement and consultations to be carried out when looking at extending the uses of genome editing, particularly beyond battling disease and disability.
CRISPR is a technique which comprises of short stretches of RNA that can be tailored to match up with any DNA sequence. Once matched, an enzyme is dispatched to snip that DNA and plug the hole with other genetic material. It is the fastest and most cost effective method of gene editing and has been heralded as a tool that could rapidly advance our understanding of, and treatment options for, disorders like cystic fibrosis and Huntington's Disease. In light of these capabilities, it is also the reason the US National Academy of Sciences carried out the report.
Trials on genes in the lab, and on mice, have been successful, but editing the human genome is a further step that bioethicist at the University of Wisconsin-Madison and co-chair of the committee, Alta Charo, says “is not ready.” But, "if certain conditions are met, it might be permissible to try it."
Because any human born from an embryo that has been edited (germline genome editing) would pass on that new genetic information, irreparably altering the genetic makeup of its descendants, the committee argues we are a long way from being able to use it safely. Current regulations for existing gene therapy, however, will suffice when it comes to somatic human genome editing research and uses.
Although the report emphasises that the early days of genome editing - which we are well and truly in - be reserved for targeting the most serious diseases and disabilities, it did leave the door open to further uses, and explained how they could come about as byproducts of research. Using genome editing therapy to improve strength in muscular dystrophy patients, for instance, could also be used to make healthy people stronger.
Currently, the risks of such a procedure outweigh the potential benefits but “with additional research, those risks will probably diminish and it will become increasingly important to have public input on how to weigh the purported benefit of an enhancement against those risks,” the report states.
The committee acknowledged the “public discomfort” around these kinds of applications, due to fears over a future dystopia forewarned in countless books and films: “whether for fear of exacerbating social inequities or of creating social pressures that drive people to use technologies that simply are not necessary.”
“Public discussion is important for exploring social impacts, both real and feared, as governance policy is developed.”
This article was originally published by WIRED UK
