A National Academies panel on human genome editing chaired by Alta Charo and Richard Hynes released its report today. While it covered both somatic and germline (heritable) human genetic modification, the latter topic is far more contentious. You can see the National Academies summary of their report here. You can read the full report here.
On germline genetic modification using technologies such as CRISPR, the authors of the report carefully discussed potential benefits and risks to the use of this technology. On my first brief reading of it, the report is mostly appropriately cautious in terms of outlining the potential risks as well as societal and bioethical issues in addition to potential benefits.
As to the more controversial area of potential human germline genetic modification, I appreciate the fact that the report unambiguously says that human germline editing is not ready to be tried and lists numerous hurdles to address first. However, although the report tackles most of the key considerations and risks (and for that the authors should be commended), there is still an interesting undertone to the report’s discussion that seems to strive to justify leaving the door open to potential future use of human germline editing.
For instance, the report makes a point of noting mostly hypothetical instances where existing technologies such as PGD that are far less controversial may hypothetically fall down and so possibly might need to be supplanted by germline editing using techniques like CRISPR, but such instances are now and in the future would continue to be exceedingly rare. Too much weight are placed on these.
The other point that needs to be made is that hypothetical future germline editing in human embryos (or even done earlier developmentally in, for example, germ cells) with reproductive intent would have to be preceded by a great deal of research that involves PGD-like testing of human embryos to monitor efficiency and specificity of editing, chimerism, and other issues so it is not as though germline editing could avoid PGD-related issues or destruction of embryos.
I’m also not convinced that the personal need by some individuals to have a genetically-related offspring should be a major consideration in decisions related to the permissibility of human germline gene editing. The related concept of parental autonomy is given too much weight by the report. While this argument has both aspects that intuitively make good sense, it also has some that could lead to promotion of germline modification.
For instance, what if parents want their kids to have certain traits that become potentially available via germline modification? In this regard, the ability of researchers and policy-makers both in the US and more globally to prevent parents and practitioners from going down the path to use germline human modification for traits rather than strictly health conditions may prove to be quite limited and it’s not clear had to address that risk. The report in some places does not use strong enough language to counter the idea of human germline modification.
On the whole, I have favored a moratorium on germline modification, a step that this report does not take. Of course there are possible problems with a moratorium too including enforceability (lack thereof) and that once you have a moratorium it might be hard to escape it (e.g. if the government follows suit with legal steps) even if down the road the science were to back up getting rid of it. Note that as the report mentions, for at least some months longer, in the US the FDA cannot consider applications for any human embryo genetic modification and then there’s the Dickey-Wicker Amendment that disallows federal funding of anything that involves ‘destruction’ of human embryos and such things as using CRISPR modified embryos to do PCR for research would qualify as destruction. But then there’s loads of private money out there for research as well.
What are your impressions of the report?
For more of my thoughts and concerns on human genetic modification you can read my book GMO Sapiens and watch my TED talk (below).
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As a graduate student in the stem cell field, I’m quite happy with the report. They clearly want to advance the technology in a safe manner. I see no problem with this.
It boggles the mind that one can support stem cell research, an equally controversial and unsafe field, but not germline editing. A moratorium is no different than a ban. People complain that not enough is known for germline editing to be safe (now), but support halting all of the research needed to make it safe! To ban germline editing is no different than when Bush banned federal funding of stem cell research. If we ban germline editing, then all progress on it will stop… forever. We will be stuck.
In regards to not wanting people to enhance their children, it is inconceiveable that we should tell people that they cannot make their children better. This is human nature. There are plenty of non-genetic ways to make children better (e.g. good parenting, good education). The concern about eugenics in the past is that existing people were being killed. This is not at all what will happen with germline editing. Moreover, the level of enhancement that could be achieved will be bound by the laws of physics. We won’t be making superman. I’m not convinced we’ll even be able to make Einsteins. I am convinced that we will be able to stop the suffering of countless future children and new humans (like the daughter of Blake in this comment section).
If germline editing is permitted, will shady companies offering false cures pop up? Of course, but the majority of scientists will be responsible. It’s no different than stem cell research today.
The argument that the technology is unsafe is uncompelling. To me, the argument against germline editing sounds more like one is jealous that children of the future could be better than us today. This is to me unnatural. If our children are better than us, and even evolve into a superior species (this should happen anyway according to Darwin), then I think we would be very good ancestors.
this is a classic “slippery slope” issue.. any exceptions will someday become a gateway to acceptable/not acceptable uses; and ultimately acceptance with exceptions… so unless we’re willing to accept that end of the story (and there are arguments for that) this is a door that should never be left cracked ajar..
Hi Richard,
Thanks for the comment. I tend to agree with you and am concerned what the future holds on this front.
Paul
But could it be rectified now that she is a sole being in need of therapy exactly like this as no other form of therapy is even a real possibility. What about supplementing the body with the right kind of protein and hoping the body will pick it up instead? Looking for some HOPE. Thanks Paul
I have a daughter that was born with a completely de-novo condition causing a disorder in her CDKL5 gene at a certain exon. This causes the wrong protein to be made and symptoms of seizures, developmental issues and weak muscles. Parents like myself see this as the only cure to be available. We just want to fix our babies without any other changes made. What do you think about helping babies such as ours with CRISPR? Our baby Aria is 16 months old and has been having uncontrolled seizures since 2 months of age.
@Blake,
Unfortunately, for a de novo condition, it can’t be prevented using genetic modification since it isn’t known to exist before the child is born.
The kind of hypothetical gene editing that the National Academies report is focused on discussing for inherited genetic disorders it would have to be for a condition that either (A) is known to be present as a mutation in at least one parent in advance of having a child or (B) be addressed via gene therapy if it could be used as a possible treatment after birth. But for (B) the challenge is making the genetic change in the specific cell type that causes the disease at a high enough efficiency and specificity.
Have your baby’s doctors talked about other options?
Thanks for sharing your story and my best wishes to your baby.
Paul