We live in interesting times with respect to our mastery of the human genome. Gene editing technologies such as CRISPR/Cas9 are improving rapidly; permission has been granted for their use in the human embryo; IVF technologies to replace mutated mitochondria are one step closer to being considered safe enough for live births. The 14 day rule for studying human embryos, a line in the sand laid down by Baroness Warnock, is being challenged.
In a recent online poll we asked BSGCT members, who must be at the forefront of this research, to define the limits of what they consider ethically acceptable. First, we have to note that the response was not high – only 8% of our members voted. Whether this represents a lack of engagement or a lack of concern about current events we cannot tell.
Of those that responded, a strong majority (but not all) supported that gene editing of embryos should be allowed to better understand causes of disease such as miscarriage and developmental disorders, with the 14 day rule in place.
Modifying somatic cells for disease treatment was also highly supported.
For the much more contentious issue of gene editing of embryos to produce live births and inheritable gene alterations to treat disease (e.g. HIV, cancer, rare genetic disorders) there was surprisingly a majority of 52% to 37%, with 11% undecided.
Given that this is currently illegal throughout the world, this result is striking. One person commented “If embryonic mitochondrial replacement is allowed for the purposes of treating disease then nuclear gene editing techniques should also be permitted” and another, tellingly, “I know how it feels to have a child with genetically inherited disorder”. Those in favour emphasised safety and proper regulation, while those against raised the spectre of eugenics and a rich/poor divide for accessing such technologies.
When the question was changed to the use of gene editing for human enhancement then the favourable result was reversed, with 81% now against. Interestingly, that was also true for gene editing of somatic cells for enhancement purposes, with 63% against even if the result could be resistance to disease.
So, we are seeing a group with probably a greater support for clinical use of these gene editing technologies than would be found in the general population, but still a good deal of caution, and with a strong belief in the necessity of firm control and legislation. It will be interesting to repeat this in future years, to see how acceptance changes with the development of the science and the evolving landscape of gene therapy generally.