With CRISPR, how should we understand disabilities?
Technological advances always offer a note of caution for the prudent, hope for the optimist, and danger for the cynic. Whereas all have merit in their stance, each needs to carefully listen what the other has to say. For the past couple of years, a new technology has caught the imagination of both scientists and the public; CRISPR (pronounced Crisper) has opened new possibilities for the field of genetics.
What is referred to as CRISPR stands for Clustered Regularly Interspaced Short Palindromic Repeat. This process was incrementally discovered over 25 years, yet Dr. Emmanuelle Charpentier and Dr. Jennifer Doudna found the final piece of the puzzle and brought the technology to public light.
What is CRISPR/Cas9?
At its most basic level, CRISPR/Cas9 is a technology which allows for genome editing through the splicing of new DNA material with the host’s DNA.
The human body is held together by the genome. The genome contains all the information for the construction and maintenance of the body. The genome is the complete total of the organism’s information; it’s made of chromosomes, which are made of genes, which in turn are made of DNA. And the DNA is the heart of the issue.
It’s easier to understand DNA as the blueprint of a gene. In the DNA are the very specific instruction for how to build every component of an organism (animal, plant, and bacteria). The information ranges from genetic information to genetic expression. Hence, genes can determine conditions for a person’s immune system, motor skills, structure of body parts, and everything in between. Sometimes a condition can be traced to one specific gene, or to several genes, and even entire chromosomes.
So DNA is the makeup of everything in the body. Yet, DNA itself is made of several components. The most important to remember are the bases it has (four bases), since the bases are the encoded information.
A DNA segment has repeated information, separated by spacers (a set in itself of bases arranged differently from the repeated segments). Bacteria commonly use these spacers to store information of previous attacks by virus. When a virus attacks a bacteria, it does so by injecting its DNA into the bacteria’s. The bacteria then uses its defense mechanism to isolate and destroy the threat. The mechanism is called CRISPR. It will cut the infected segment, repair it, and store information of the invader to effectively prevent any future attack by this specific virus. Hence, it makes a Cas9 protein that slides through the DNA strand, guided by an RNA copy, and will replace/repair any corresponding segment. In a matter of minutes, the entirety of the bacteria’s DNA will be altered to protect it from further attacks.
In their research, Dr. Doudna and Dr. Charpentier realized they could chose what sequence of DNA to alter by creating their own guide RNA, and using the Cas9 protein as the splicing tool. The CRISPR technology has already been put the use, and offers a medical break-through. In 2017, the Center for Embryonic Cell and Gene Therapy in Oregon successfully repaired a disease causing mutation in embryos and in 2015, two babies with leukemia were successfully treated through CRISPR.
If CRISPR is the new scientific campaign, who is the enemy?
It’s a hard question to answer, and one that can’t sidestep the ethics of the practice. Essentially, without a moral framework to the application of the technology, as a society, we might be at risk of choosing the practical answer instead of seeking a more wholesome approach. Specifically, when entire populations understand their identity on the basis of their genome, it’s important to approach the issue with caution.
Generally, the conversation has been dominated by topics such as designer babies, and defining the boundaries set by nature. But to some, CRISPR may pose a threat to their very existence.
Rebecca Cokley, director of the Disability Justice Initiative, however raised another valid point. Is it fair for the rest of society to judge her condition as an infirmity? Cokley has achondroplasia. To her, her condition has not been a barrier to life, and hasn’t stopped her from being a successful member of society. She regrets are the limitation people with disability encounter in society due to an ableist system.
Cokley is not alone arguing in favor of disability. On October 2017, Frank Stephens made a similar plea to Congress. The Olympian, actor, and lecturer gave a powerful speech in which he told Congress “I don feel I should justify my existence”. He went on to cite the contributions of Down Syndrome to society, and lamented actions taken by countries such as Denmark who systematically abort embryos with Down Syndrome.
Both Cokley and Stephens defend their right to life with their condition. The former a dwarf, and the latter with Down Syndrome, both are ardent proponents of creating a society which gives them opportunities, rather than one who sees it as a hindrance.
History always cautions against practical answers to complex situations. Big scientific leaps are always followed by much care and caution. One hand hand, CRISPR has tremendous potential in offering cures to many ails. On the other, the implications of its application need to be thoughtfully considered.
“Please, don’t edit me out”
In her opinion piece for the Washington Post, Cokley begs society to not edit out of the population people with disabilities. She wants to be seen for the person she is, outside from her physical difference. Yet, achondroplasia is only one example of different conditions on which society is quick to make assumptions.
In America alone, about 1 in 5 people have a disability. As Cokley points out in her TED Talk, the Americans with Disability Act was the largest expansion of civil rights since 1964. The Act was signed in 1990, and the changes to provide equal opportunity and rights to the disability community has only been around for 28 years. The Act, backed with the proper funding, has permitted many families to enjoy a better quality of life by having governmental support in raising their children with disabilities.
What we have seen in recent years the progress and benefits of providing ways in which the disability community have contributed once provided the proper mediums for success. Making room for them in society will have a financial cost, more expensive than editing them out with CRISPR, but the question still needs to be weighed carefully.
Perhaps the problem begins with the words and way we view the community with disabilities. By using words that imply a deficiency, and by looking at them through those lenses alone, we are quick to judge their existence. It’s ethically a slippery slope, and before we use CRISPR on a large scale we should seek the inclusion of the groups we have, and strive for longevity and quality of life.
