Questioning the medical definition of disability through looking at milestones in genetic engineering.
Writer: Evelyn Nguyen
Editor: Sara Maria Majernikova
Artist: Vedika Rajavat
During a typical rainy-gloomy London February week, I made my trip to the Francis Crick Institute for an exhibition concerning genome editing, and the shining star of the evening was CRISPR-Cas9. Created in 2012, CRISPR-Cas 9 has quickly made its way into becoming the trendiest, most prominent tool for “tweaking” genetics of any species, with its precision, scientific efficiency and economic nature. CRISPR arrays enable bacteria to “remember” viruses (or closely related ones). If the viruses strike again, the bacteria employ the CRISPR arrays to generate RNA segments that target the viruses’ DNA. The bacteria then employ Cas9 or a similar enzyme to cleave the DNA apart, rendering the virus inoperable.
The invention was so significant that its two co-researchers, Emmanuelle Charpentier and Jenifer Doudna, were awarded the Nobel prize in Chemistry in 2020. Needless to say, the discovery offers the keys to numerous scientific issues, ranging from a drug to cure HIV, to studies of underlying molecular mechanisms of various diseases. However, the most exciting possibility of all, that has scientists and medical practitioners raving, is the complete eradication of genetic diseases or genetic transmissions.
Intriguing as the conference at the Francis Crick institute was, I was most affected after a conversation with a young researcher on the controversy of genetic engineering, especially germline genetic engineering. As our conversation sweeps from the basic structures of CRISPR-Cas9 to the utterly shocking event of November 2018, with the birth of two CRISPR-Cas9 gene-edited baby girls, targeted by the gene CCR5, with the aim to eradicate any possible HIV transmission. The rebellious attempt receives countless backlash and criticism, raising the fear of a possible “eugenics” future era.
The discussions were cycling in my head, and then one afternoon, I was reminded of a paper that I have read several years ago, where a deaf couple utilised PGD to ensure that their prospective offspring will be deaf.
The two stories were proposed distinctly, yet, what was similar between them is the criticism, the controversy and the “avant-garde” ness. Genetic selection and modifying tools have both been employed to achieve the most “desirable embryos”.
What is it, then, that defines the characteristics of A DESIRABLE EMBRYO? According to the Procreative Beneficence proposed by philosopher Savalescu, parents should conceive a child with no disability, and if possible with desirable features as outlined in general-purpose means. According to the current Equality Act 2010 definition of the UK government, you are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
In order to dissect and critique the above definitions, I looked into several surveys concerning deaf individuals’ life satisfaction, who according to societal standards, are considered disabled and less advantaged due to their loss of a sense. However, rather than clinging to the social stigma, deaf people actually cherish their deafness, and it was given the name “deaf gain”, with next generations of deaf parents feeling more comfortable being within the deaf community compared to their hearing friends.
This perspective from the lens of people outside the social norm urges me to think about our definition of normalcy in today’s societies.
What are your thoughts, dear reader?