“Your scientists were so preoccupied with whether or not they could, they didn’t stop to think if they should”. 25 years on, this quote from Jurassic Park by the great Jeff Goldblum rings truer than ever. While every great scientific advancement experiences some level of discussion and controversy, no field attracts more debate than that of human genetic engineering. The development of Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR)-Cas9 gene editing technology has prompted more dispute than potentially any other biological technologies. Never before have we had the ability to so easily and effectively change the human genome—for better or for worse. CRISPR-Cas9 is forcing scientists, governments and the general public to assess the potential consequences of gene editing technology. Are we as a society ready to grapple with the questions gene editing forces us to con‐sider: should all perceived disabilities be cured? Will the likely cost of gene editing widen social inequalities?Are we ready to be able to control human evolution rather than leaving it to chance?
CRISPR-Cas9 is a gene editing technique that allows for any region of the human genome to be specifically targeted and edited. The field of gene editing was revolutionised. Gene editing experiments were now quicker, cheaper and much more efficient. While the vast majority of re‐searchers used CRISPR-Cas9 to understand the basic functions of genes or to target a specific disease-associated gene, there are several researchers whose experiments fall in a more ethical grey area.
Human Germline Modification (HGM) is the deliberate alteration of human eggs, sperm or embryos which will affect not only the individual in question, but all future generations of the said individual. From the moment CRISPR-Cas9 technology was released, scientists were well aware that this leap forward in technological potential warranted a further debate on societal consequences of HGM both positive and negative. Thus, the first International Summit on Human Genome Editing was held in 2015. It was hosted by the Chinese Academy of Sciences and the UK’s Royal Society and the scientific and ethical issues associated with human gene-editing research were discussed. A group of global experts cautioned that HGM could profoundly ‘alter future human societies’, and ‘exacerbate existing inequalities in society’. Though not against the idea that CRISPR-Cas9 could be used as a preventative treatment for genetic diseases, the report from the conference was cautious. It stressed that at the time in question it ‘would be irresponsible to proceed with any clinical use…unless and until (i) the relevant safety and efficacy issues have been resolved…and (ii) there is broad societal consensus about the appropriateness of the proposed application’. Despite the clear advantages CRISPR-Cas9 has over previous gene editing techniques, not all safety and technological hurdles have been overcome. Though HGM was not banned, the conference recommended that a voluntary moratorium be put in place until the aforementioned issues were resolved. Broad societal consensus had not and has not been reached with regard to gene editing-based therapies, and regarding non-disease associated gene editing, there is even less consensus.
Announced days before the second International Summit on Human Genome Editing, the scientific community was shocked on the 28 November 2018 when Dr. He Jiankui announced the birth of the first CRISPR-Cas9 gene-edited children, twin girls called Nana and Lulu. Dr. He disabled the CCR5 gene, which the HIV virus uses to enter and infect cells. Dr. He’s experiment was met with nearly universal condemnation, with scientists labelling his experiments profoundly disturbing and monstrous. Dr. He is not the only researcher pushing the ethical boundaries of gene editing.
Dr. Denis Rebrikov, a Russian scientist, has announced plans to carry out similar experiments to Dr. He’s in children at risk of contracting HIV in utero. But it is Dr. Rebrikov’s other planned experiments that capture the ethical complexities of gene editing. He has revealed plans to prevent deafness in children born to deaf couples using CRISPR-Cas9. While deafness is classified as a disability, the line between disability and diversity is becoming increasingly lax. Many deaf individuals feel that curing deaf‐ness would rob them of the rich world of deaf culture and that attempting to“cure”deafness is belittling and immoral. They are not the only ones to feel this way. Those with conditions such as dwarfism or autism hold a similar view. This raises a serious question—should such conditions be cured or should the focus be on increasing accessibility and societal acceptance? Targeting these conditions as some‐thing that needs to be fixed could reinforce social stigma and is uncomfortably close to eugenics (promoting the improvement of inherited human traits through intervention).
For some, the holy grail of gene editing technology is the infamous designer babies. Human embryos would be edited in order to create a more advanced individual, particularly with regard to traits such as intelligence, height or athleticism. Though we neither have the technology to achieve this level of gene editing, nor do we know all the genes involved in the desired traits, it is imperative that the ethics and limits of “designer babies” be established before we can do it. It is likely that HGM—whether carried out via CRISPR-Cas9 or other methods—would be extraordinarily expensive and therefore restricted to those who could afford it. This would prohibit CRISPR-Cas9 technology from being spread equally across all socioeconomic brackets, potentially creating a genetic aristocracy associated with better health, higher skills and longer life. This would widen existing socioeconomic inequalities.
And what about the designer babies themselves—would the biological advantages given to them correspond to a similar social advantage?Some people are naturally gifted in certain areas and this is applauded and celebrated. But what if someone was born genetically enhanced for speed and won gold in the Olympics—would this be celebrated or condemned?
Furthermore could gene editing technology force us to decide on what we consider true humanity? Evolution (the change in a population over successive generations) can introduce drastic changes to a population, but these changes can take thousands if not millions of years. Evolution is an inherently random process highly influenced by environment. Advancements in gene editing allow for a more self-guided approach as well as significantly speeding up the rate of change. Could we end up changing swathes of the population so much that they are seen as inherently different from humans—and if so, what would these changes be?
There are no inherently right or wrong answers to these questions, nor can they be answered by one person. The ethical and societal consequences of gene editing technology are far-reaching and will require world wide discussion and collaboration in order to reach a satisfactory conclusion that will harness the extraordinary potential of gene editing while protecting us from ourselves.
This article was first published in our Michaelmus Term 2019 Issue: Perspective
Featured image by Maria Kostylew. In text image by Emma Mee Hayes.