23 September, 2021

The Humanitarian Collective

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Anything but Rocket Science: The Ethicality of Genetic Modification

In comparison to the days of Darwin and Einstein, the development of science and technology over the past few decades has been fast-tracked. Scientists are always striving to understand the world around us and the origins and function of complex life on earth. Notably, the exciting development of genetic modification and engineering will forever change our perspective on life and human disease. 

CRISPR-Cas9 is a gene-editing tool derived from a naturally occurring process in bacteria that allows bacteria to carry out gene-editing to resist bacteriophages.  In a lab, CRISPR-Cas9 allows scientists to alter, add, or remove segments of DNA from an organism’s genome. Although the tool still requires a fair amount of research and refinement before it can be truly utilized, the possibilities are endless. One of the aforementioned possibilities is treatment for inherited genetic disorders. For example: Cystic Fibrosis, Hemophilia and Sickle Cell Anemia. While curing these diseases could truly be seen as a breakthrough for modern medicine, there are many ethical and political concerns that start to bubble in our throats.

It’s important to note that genome editing is currently being researched within animals and in rare cases, humans/embryos. For example, a scientist in china who delivered twins who were genetically modified (its success and ethics are still up for debate, or mice who were genetically modified to remove hemophilia from their genomes. My concerns fall under a possible global scale usage of this tool. 

In my view there are two important questions to ask about future commercial (for lack of a better word) usage of genome-editing, and the rest will follow.   

Firstly, will genetic modification be part of a public health care system (for countries that have adopted universal health care), or would this be a private service that only the top ten percent can afford? After all, it’s important to note that this type of science and research is expensive. Every lab coat, microscope and piece of heavy machinery costs a pretty penny.  

If gene-editing was a part of a private health care system or run by a private corporation, how is it fair to allow those who can afford it to receive treatment for their ailments, and not those who fall into a different socio-economic class? We all deserve to receive the same medical treatment no matter what differences we hold in wealth, race, religion, and of course social privilege. If gene-editing was a part of a universal health care system, what would be the criteria that constitutes this form of treatment? Where would the money come from for a government to pay for it? These are all questions we must critically pose to ourselves, the scientific community, and the government if we are to introduce this development in an ethical manner. 

Second, would wide-spread genetic modification be solely for the purpose of treating diseases and disorders, or would this tool be commercialized for everyone (and their dog) to modify their children to make the ‘perfect’ child?

This question is a heavy one. The first aspect we need to consider is consent. Would a child or the dependent of someone else be accepting of genetic modification that isn’t for a life-threatening or disabling disease? From a legal standpoint, consent isn’t essential if the patient is under 18, but is it ethical? Would this be fair to the patient or to the people who could use CRISPR-Cas9 to treat various inherited diseases but can’t afford it? 

The topic of “designer babies” also falls under the question of cosmetic versus medical procedures. In the process of In-vitro Fertilization(IVF), doctors can use pre-implantation genetic diagnosis (PGD) to determine any inherited traits that may be harmful to the child or the mother during labour. The parents can choose an embryo that has favourable genes to carry to term based on their preference from the PGD. 

Regardless of the answer to the questions above and the many others to come, there is always a security risk involved, as there is with everything. For a company or government service to sequence your genome and store that information, poses a great threat without the right security measures. The theft of this information is truly the ultimate form of identity theft. In my view, that is far more worrisome than the theft of a credit card or passport, which are all replaceable items, in contrast to your genetic makeup. Would the people who store this information be liable for any misuse or security threats to the privacy of your sequenced genome, or would the responsibility fall to the person who chose to store that information with said group?

Overall, there is still a long way to go both scientifically and ethically before genetic modification can be a real tool to the global community. With the wrinkles that need ironing, there is one big question mark left on the page.

It is worthy of note that I’ve excluded things, whether purposeful or not, in an effort to share my thoughts and inform you (the reader) in the clearest manner possible. This is a very broad topic with many branches, and it can be difficult to summarize all of it properly in several hundred words. 

The above is an editorial piece that does not necessarily reflect the opinion of the Humanitarian Collective, its Editorial Board, opinion editors, constituents, or sponsors.



What are genome editing and CRISPR-Cas9?

Preimplantation Genetic Screening –Diagnosis PGS, PGD – IVF

Ethics/education Designer babies

The CRISPR-baby scandal: what’s next for human gene-editing

Ella Parsons is a 16 year old student living in Newfoundland and Labrador, the most easterly province in Canada. She enjoys music and has been an avid performer from a very young age. Her major interest include science and biotechnology. When she's not busy with either of these things, she usually has her nose in a book.