Perspectives: no human genetic modification moratorium from organizers of #GeneEditSummit

I just got back from a historic summit on human genetic modification in Washington, D.C. New genetic modification technology, termed CRISPR-Cas9, has both made genetic modification a relatively simple matter for scientists and human genetic modification much more likely in the near future.

Heritable human genetic modification could prevent some rare genetic diseases so there is real potential there, but it also could open the door to serious problems such as unforeseen health consequences across generations, social justice issues, and eugenics. Both potential positives and negatives were discussed in depth at the summit. Keep in mind that most but not all genetic diseases already are preventable via existing technology that allows for genetic screening of unmodified human embryos.

I was there blogging the event (see posts here). My lab also works on genetics and genomics. We are using CRISPR for in vitro research on stem cells and cancer. The goal of the summit, held at the US National Academy of Sciences, was to chart a path forward on how science and scientists should handle the central question of whether to genetically modify humans and what considerations should go into such a decision.

The organizers of the summit tasked themselves more specifically with deciding whether to propose a moratorium on heritable human genetic modification. Several of them had in the previous months seemed to indicate support for something like a moratorium in public statements and interviews. However, at the end of the summit, the organizer’s statement did not take a decisive step. They only discouraged heritable human genetic modification. There was no recommendation for a ban or moratorium.

In fact, David Baltimore who served as Chair, said at the end of the meeting that they specifically were not endorsing a moratorium and that was a conscious decision. It’s not entirely clear though why they made this decision, which seems to leave the door somewhat open to making genetically modified humans. More on that in a bit.

My own perspective is that we need a moratorium of at least several years on clinical use of heritable human genetic modification technology so I am somewhat disappointed in the final summit statement.

Why am I concerned enough to be in favor of a clinical moratorium? I mentioned some of the risks earlier in this piece. You also can see my concerns articulated in more depth in my new educational book on human genetic modification (here; note that it is written for both lay and scientific audiences and if you are interested in getting it you can use discount code WS15XMAS30 to get 30% off) and in my new TEDxVienna talk.

The summit organizers had several options available to them on their statement. You can think of it with a stoplight analogy. They could have proposed a moratorium, or a red light. They could have wholly endorsed human genetic modification and given it a green light. In fact the headline of a news story (see image above) seems to suggest that they did do this, but that is incorrect and the actual body of that article correctly reflects that the organizers only endorsed continuing basic research, which I also support.

Another option was to make a yellow light statement something along the lines of proceed with caution. They didn’t do this either…at least not exactly. The organizers’ statement was more like an “orange light“, somewhere in between yellow and red. While they wrote that any attempts in the immediate future at heritable human genetic modification would be “irresponsible” they did not go so far as to say via a moratorium, “don’t do it”.

The vagueness to the public of the statement is further reflected in the fact that the headline of a story on the summit on the front page of the NY Times by Nicholas Wade got the gist of the summit statement exactly wrong and incorrectly said that the organizers did endorse a ban (see above).

Why did the organizers go for an orange light approach to germline human genetic modification?

Perhaps as a group this best represented their range of opinions. In other words, they themselves did not reach a consensus to have a moratorium. I didn’t sense that there was such a consensus overall at the whole summit either. Reaching a consensus in science can be extremely challenging so by their nature consensus statements may tend not to be decisive. I get that.

One potential more practical reason for not proposing a moratorium is that the organizers firmly believe that germline human genetic modification will someday prove useful and desirable. I got that vibe from some of their talks as well as from those of other very influential parties at the meeting. In that hypothetical scenario, a moratorium today could be hard to reverse tomorrow (in the future). Perhaps they didn’t want to risk impeding the clinical translation of the technology in the future with a moratorium. However, a pause in human genetic modification need not have been onerous or long-term.

Another possible consideration for the organizers is that a clinical moratorium could have hypothetically also unintentionally discouraged human embryo gene editing research in the laboratory so this may be another reason for not pursuing a moratorium. Again like the organizers, I also support such research, but for me it should be on a limited basis with appropriate bioethics training, transparency, and oversight (see my ABCD plan).

In the end, the statement from the organizers would have been more effective if it had been far shorter, clearer, and understandable to the lay public. Perhaps they were most focused on sending a message to scientists who might be more likely to get the key points of the statement, but even so it would have been best to be understandable to all.

I hope that with continuing dialogue and meetings, which the organizers also rightly proposed, that this issue can be clarified further and that the public can be engaged at a far deeper level. However, there is strong urgency for action and clarity here, and the lack of a decisive statement from this unique meeting was a missed opportunity in that regard.

Time is short. The technology in this arena is advancing at warp speed, it is so ubiquitous, and there is such strong enthusiasm that we do not have the luxury of years to have more meetings and discussions, as much as they may be very important, without taking a clear stance.

The number one question I’m hearing today after the meeting is concerning: isn’t human heritable genetic modification now already inevitable?