There is nothing ethical about a moratorium on genome editing

In recent weeks, two comment pieces have been published calling for a moratorium on germ-line genome editing. Germ-line genome editing is now feasible, even easy, thanks to new genetic engineering tools such as CrispR-Cas9. It has the potential to fix genetic diseases such as Huntington's, severe combined immunodeficiency and cystic fibrosis. So why is there suddenly a call for a moratorium on curing these diseases? Are there new scientific results questioning the safety or efficacy? No. In fact new studies are making the approach more and more realistic every day. This moratorium call is just a commentary, not based on any new science. The only reason it made headlines is that the two commentaries were published in the leading journals, one in Science and one in Nature, and because the 23 authors include some very preeminent scientists (mandatory to have your comment pieces published in Science and Nature). This was widely reported as "Scientists seek ban on editing human genome", and I expect that various bans will indeed soon be implemented across the world.

My question - as a scientist who works on genome editing using these very tools - is why? Why is there a call for a ban? The case has simply not been made that there is any ethical conundrum. The "problem" is that these cures would not only cure the disease in the child, but would also prevent the disease being passed on to their children. And why exactly is that a bad thing? "Future generations" - yadda yadda. We make decisions that influence future generations every single day. Do you think future generations will complain about not having cystic fibrosis? If need be, they could easily engineer the mutation back in, not that anyone would. You know what else potentially causes germ-line mutations? X-rays, but we don't ban them because the benefits are very large and the risks are very small. Even poverty causes heritable modification to the genome, so let's not pretend that we've never made a decision that alters unborn generations.

To me, all this moralising is more of the same that we have heard for decades about "designer babies". I'm sick and tired of hearing about the hypothetical of chosing a baby's eye colour. That is probably never going to happen, it would be easy to ban if it did start to happen, and is it really any worse than the current practise of grooming children for beauty pagents or gymnastics from an early age?

The hypotheticals that bioethicists seem to be overwhelmed about always seem to be in the indefinite future. So I'd like to give a here-and-now question to the authors of those comment pieces, and to bioethicists in general. Is it ethical to withhold medicine to children today, simply because of some ill-defined unease you have? The picture below is of a child with Olmsted disease, which we work on in the lab. Warning: the picture is not nice, but this is exactly the type of disease which could be potentially cured with the new genome editing tools.

Olmsted disease is caused by a single base-pair mutation in the gene TRPV3. It is a prime candidate for genome editing cures, but any cure would run the "risk" of not just correcting the mutation in the skin, but also of correcting the mutation in the germ-line. Is it ethical to cure such a child at the "risk" of also curing their future children? I would argue that not only is it ethical, but it is unethical to not try.

There are horrible diseases which strike down children that may never have any feasible cure other than genome editing. To not pursue that sole avenue of research would be a disgrace, an ethical failure of the highest magnitude. I, for one, will ignore any self-proclaimed "moral authority" who tells me not to work for a cure of these diseases. Unless my research is proclaimed illegal I will continue my work - and if it is proclaimed illegal I'll campaign against the unethical laws that shut down the sole hope of families with incurable genetic diseases. Ethical action requires a careful consideration of the consequences, but equally, inaction also requires a a consideration of the ethical consequences. Unless a strong case is made that the consequences of genome-editing for future generations are worse than the consequences of not using genome-editing for this generation, it would be unethical to abide by a moratorium.