Should we leave fate of offspring to genetic chance?
Ireland needs to face up to ethical and legal issues around human gene splicing
Genetic editing on human embryos brought to term has been done, despite global concern for the risks posed by using such a technology on humans.
It’s 2032 and I am sitting waiting to discuss the kind of child I want to bring into the world. Let’s pretend I carry the gene responsible for a genetic disorder. My doctor informs me that it is possible to edit this gene out of my family line with a technology called Crispr – a technique that allows for the correction of mutations in vitro which cause heritable diseases. Should I do what I can to prevent my child from inheriting this disorder? Not only for my potential child now, but for their children too? Or should I to leave it to chance?
Maybe the answer to this question is an obvious yes, I should do it. But what about eye colour? Does one’s eye colour give my future child an advantage over others? What about hair colour? What if I could choose to have a more muscular child? This can be done with Crispr too. Are these advantages as important as removing a genetic disorder from my genome?
Unfortunately, the Irish Council for Bioethics was disbanded in 2009, so there is no meaningful legislation, let alone informed public debate to guide me. There has been a political lethargy around the topic of reproductive research and practice; there is little or no legislation in Ireland governing it. Theoretically, gene-editing research can be conducted in Ireland without any specific guiding legislation. Where should we draw the line for genome modification? Given recent advances, the Government must take legislating for this reality much more seriously.
Integrity of genome
This week various scientific academies, along with stakeholder groups, met in Hong Kong to further the discussion on whether to allow for the application of Crispr to human subjects. The technique has the potential to eradicate inheritable diseases. This all sounds good, but the technology is still in its infancy – especially in its application to the human germline. The clinical application of Crispr on the human genome is currently prohibited by agreement within the scientific community due to the unknown risks it poses to the integrity of the human genome.
These off-target effects, such as the development of cancers, could show up in the next generation, the generation after that, or any number of subsequent generations. The analysis of the risks involved with using Crispr on human subjects is at an early stage. So, moving forward with such a technology requires discussion from ethical, legal and scientific perspectives.
This might seem like an academic exercise, but on November 26th, 2018, the Southern University of Science and Technology in China became aware via media reports that Dr Jiankui HE (who is on no-paid leave from February 2018 until January 2021) released a public announcement that he has carried out genetic editing on human embryos that have been brought to term – this is despite the global concern for the risks posed by using such a technology on humans.
The scientific community has condemned the announcement from Jiankui HE this week, claiming that medical application is dangerously premature. What is less clear are the applications of Crispr the public are comfortable with. This is because wide-scale public discussion has simply not happened yet. Should we leave the fate of our offspring to genetic chance? Do we have an obligation to bring the best possible children into the world? Does this involve preventing inheritable disease, or enhancing our children making them more muscular, with a particular hair and eye colour?
It seems obvious from the perspective of moral philosophy that research applications of Crispr should continue because of the obvious medical applications. Though now it seems we are prematurely thrust into considering the ethics of Crispr in human subjects without any consensus on its safety. There is a danger that research applications will come under much more scrutiny because of concerns that they will be used to determine cosmetic rather than medical considerations. This will prevent meaningful and life-changing research.
The bottom line? Crispr is currently dangerous for use on human embryos that are intended to be brought to term. But beyond this, Ireland currently has no legislation on the application of Crispr. We ought to consider our red lines, and put these in legislation.
Olan Harrington is a postgraduate research student in philosophy at the school of humanities at Glasgow university