Bring on the designer babies (or don’t): the question of human genome editing

by Haley Richardson

While genetic engineering of the human genome may seem like a concept exclusive to works of science fiction a la Gattaca or Ender’s Game, the reality could be much closer than you think. Recent technologies, such as the development of CRISPR/Cas9 techniques, have made genome editing better, faster, and above all, cheaper. The accessibility and relative ease of these technologies have caused a boom in genome research unlike anything since the Human Genome Project. Although researchers initially limited themselves to editing genomes of the most basic organisms, recently scientists have been upping their game with more complex organisms, including humans. Ethical concerns with this practice have been raised across the political spectrum and in both public and private life with many questioning if, and how, this research should be regulated.

There are two categories of human genome editing: somatic cell editing or germline editing. Somatic cells are any non-reproductive cells, and any changes made to the genome of somatic cells of an individual cannot be passed down to his or her children. Changes to germline cells, on the other hand, are heritable and can be passed on to future descendants. As a result, germline editing research is often more controversial than somatic cell research, and is illegal in several countries including Canada, Australia, and most of Europe. While not outright illegal in places such as the United States, China, and Japan, germline editing research is highly restricted. Despite these restrictions, in 2015, researchers in China reported their first attempts to edit human germline cells in embryos, sparking ethical debates and calls worldwide for tougher regulation of the research.   

In response to these concerns, several organizations within the scientific and medical community have reported their own findings and recommendations. The National Academy of Sciences and the National Academy of Medicine in the US released a report in 2017 titled Human Genome Editing: Science, Ethics, and Governance.  The NAS/NAM report analyzed the research that is currently being done in this area and provided recommendations on how to manage it. While the report is more in favour of somatic cell research, they recommend that germline research should be allowed as well, so long as the public is notified and in favour. Furthermore, it states that genome editing should be used strictly for “the treatment of disease and disability”, and not for aesthetic or performance enhancing purposes. In other words, the designer babies of science fiction should not be on anyone’s agenda, unless it is to rid the gene pool of a serious disease or disorder.

While some scientists have applauded the report, others are not so sure. Those in favour often cite how restrictive many of the recommendations are, saying that the report only allows germline editing in extreme circumstances with no available alternatives. Critics are quick to point out, however, that while the report recommends these restrictions now, they leave the future open to debate once the technology has improved. As a result, many researchers have argued that germline editing should not be allowed under any circumstances, as once the door is open, it will be harder to control how the technology is used.

Even scientists who have worked with genome editing research for years, such as Edward Lanphier, are opposed to the transition to germline editing. An article in Nature co-authored by Lanphier, who has been involved in somatic cell editing research and clinical trials, claims that germline editing could have “an unpredictable effect on future generations”, making it “dangerous and unacceptable”. Furthermore, Lanphier argues that somatic cell research has the potential to cure genetic disorders and save many lives, and allowing controversial germline research to occur jeopardizes the already tenuous acceptance of somatic therapies by politicians and citizens.

After all, while some reports have shown that the public is becoming more comfortable with genome editing, many are still strongly opposed or mistrustful of the idea. A study conducted by the PEW research centre indicated that nearly half of the American citizens questioned in the study said that genome editing to produce healthier babies was “crossing a line” and “meddling with nature”. This indicates that even if the scientific community manages to come to a consensus on germline editing, it would likely require a significant amount of outreach to get the public (and therefore politicians and lawmakers) on board. So while you can’t expect to wake up tomorrow living in an Aldous Huxley novel, you might not be mistaken for feeling as though a brave new world is just around the corner.   

References:
http://www.businessinsider.com/china-edited-human-genome-laws-2015-4
http://nationalacademies.org/cs/groups/genesite/documents/webpage/gene_177260.pdf
http://www.sciencemag.org/news/2017/02/us-panel-gives-yellow-light-human-embryo-editing
http://www.nature.com/news/don-t-edit-the-human-germ-line-1.17111
http://www.pewinternet.org/2016/07/26/u-s-public-opinion-on-the-future-use-of-gene-editing/