A few weeks I wrote a post on the remarkable recovery of a little girl with leukaemia. She was being treated at Great Ormond Street Hospital for Sick Children and her doctors had used a revolutionary new gene therapy to cure her of her cancer. The technology in that particular instance used a system for editing genes known as TALENS, this is a less well known but broadly similar technique as the now world famous CRISPR/Cas9 system.
Be it one of these two or any other gene editing tool we do now, at last, seem to be on the verge of developing some of the techniques that the field of genetics has promised us. To quote the uncle of my favourite superhero, however: with great power comes great responsibility. So it was no doubt with that very quote in mind that the Royal Society, the Chinese Academy of Sciences and the US National Academies of Medicine and Science convened a special panel to discuss the state of the art and the ethical and societal consequences that may be waiting for us down the road.
They published their report on December 3rd and I think they came to a sensible and progressive conclusion. They made four main points, the first being that at a fundamental level basic research needs to continue. This would all be pre-clinical work in systems other than an actual human being, for example, animal models, human tissue cultures and human embryos that will not go on to create a pregnancy. Indeed, they stipulate that any cells that are altered should not ever be used to create a pregnancy.
The reason for this stipulation ties in to their second and third points. They say that when it comes to clinical work, like that of the little girl I wrote about previously, they make the distinction between treating somatic cells and germline cells. Somatic cells are the bulk of our cells; your skin, your blood, your bones – everything that isn’t your eggs (if you’re a girl) and your sperm (if your a boy). The germline cells are the eggs and sperm. They argue that research into treatments of somatic cells should proceed at pace, under all the normal regulatory requirements, but that germline treatments should not be attempted.
Once again they’re trying to steer people away from any course of action that would lead to these artificial modifications to the human genome being released into the wild, so to speak. The reasons for showing such caution are clearly explained. Along with treating a host of very severe genetic conditions, the ‘enhancement’ of an individual’s abilities or attributes would also fit in to this category, a situation they are keen to avoid, as am I.
Other issues are that there would be no way to put this particular genie back in it’s bottle, once out there we couldn’t easily remove the modifications from the gene pool again. Also, how would we consent future generations yet to be born? What if they don’t want to have their genome altered, even if it is for an apparent benefit? This is particularly prescient when the technology is so new. We know pretty much what is happening on a molecular level when we use these tools, but we don’t know enough. We don’t know how accurate the tool is, we don’t know how any artificial variants might interact with other natural variants that it meets in the population, we don’t know the implications of any mosaicism in future generations.
Sagely they note that scientific progress is ongoing, that societal attitudes are constantly evolving and that, therefore, these topics should all be revisited on a regular basis to take new information into account. Which brings up their fourth and final point: that a permanent, ongoing forum should be created for exactly these kinds of issues to be addressed. It should be noted that this report is in no way legally binding, each country has it’s own laws on these matters that take precedence but it could be the job of this new forum to inform and guide legislators whenever they come up for review, as they surely need to regularly to take new scientific advances into account. But with the leading organisations in three of the biggest hitters in biomedical research all agreeing on a de facto policy it would be a brave scientist to go against them.
I find the report to be very measured, calm, and responsible in its outlook. It recognises the need for continued research into the topic and accepts the clinical application of such techniques in cases where the consequences will not stretch past those of the individual, but also keeps the door open for progress and changing attitudes and new discoveries.