In 2003, an almost 15-year long study with a whopping cost of $2.7 billion dollars, named the Human Genome Project, provided us with the genetic blueprint of a human being. In this study the human genome was studied, which is the overall set of deoxyribonucleic acid (DNA) in our body. DNA is made of the iconic twisting, paired strands. Made of four chemical units, known as the nucleotide bases: Adenine (A), Thymine (T), Guanine (G) and Cytosine (C). Located in pairs on opposite ends. Within the nucleus of our cells 23 pairs of chromosomes exist, encapsulating approximately 3 billion pairs of the paired strands. Working together, all of these pairs are the building pieces that determine us: how we look, how we act and how we feel.
Even though the meaning of every DNA pair or group of DNA pairs has not yet been discovered, a lot of information has already been acquired such as the genetic code of diseases like Alzheimer’s, Sickle Cell anemia, blindness, AIDS, muscular dystrophy etc. Moreover, we also already understand some genetic code that serves as building blocks in common physical attributes such as: eye colour, hair colour and even proneness to sweat!
Industry appearance and growth
Since the completion of the human genome project, the price of sequencing your own DNA has drastically fallen with current costs for a complete individual genomic picture falling under $1000 Dollars.
This drastic fall in price has given space to a whole new industry, with companies like MyHeritage, that provide test kits for a mere €49 euros to determine your biological heritage, sharing information on what areas of the world (such as Europe, Asia, North/South America, Africa, etc) your former ancestors were from. Even though the overall truth and effectiveness of these tests is still under scrutiny by many, it already portrays the start of a new industry emerging.
On a more serious note, there are also more practical applications were the screening and data compilation of the human genome has proven to provide a lot of value such as; carrier testing, for the chances of genetic diseases for offspring. Prenatal testing, to find out genetic or chromosomal disorders. Forensic testing, for crime scenes, predictive testing, to detect future disposition to diseases such as Alzheimer’s. And lastly, preimplantation testing for in-vitro fertilization, to test the genetic code of fertilized eggs.
Cost per genome data – 2020
The value of the human genome, and uncovering its many secrets exponentially rose when in 2012, a breakthrough led by Jennifer Doudna and Emmanuelle Charpentier Showed how an enzyme called CAS-9 could be used to cut, edit or add genomic data into our DNA.
This discovery was made by researching the antivirus defence in bacteria, whom, when attacked by a virus, would create a defence mechanism building the DNA of the virus into its own genome. With this, scientists were able to learn how genome patterns work as well and what they mean, these patterns are also known as “Clustered regularly interspaced short palindromic repeats”, also known as CRISPR.
Sequencing enough genomes and doing enough tests in order to figure out the exact use of fragments of genetic code is very data heavy. As mentioned before, each human being is composed of about 3 billion pairs of genomic material. Nevertheless, with recent advancements in big data computing and AI, deciphering and altering the code of life has never been this close. Because of this, the genetic testing market has been growing exponentially with a CAGR of 11,5% annually. Many countries are actively investing in this new technology, with places such as the UK aiming to fully sequence the genome of 5 million Britons, the US aiming to sequence over 1 million US citizens and China being most aggressive, aiming to sequence 50% of new-Borns by 2020.
Innovative disruption
The cost of editing and studying the human genome has drastically fallen. This has opened up the scene to biohackers, a group of people, without medical qualifications (in most cases) that decide to take CRISPR advancements into their own hands. As can be seen in the Netflix documentary series Unnatural Selection, people can buy human genome editing toolkits from $60 to about $1000 (Available in the US but illegal in the Netherlands) where they tinker with the human genome and in extreme cases auto experiment with themselves such as the case with Tristan Roberts, an HIV-positive man who self-injects himself with an experimental gene therapy that is yet unproven in its efficiency. Or Josiah Zayner, a famous biohacker infamously known for injecting himself with self-enhancing gene therapy in a convention with the aim of increasing his strength.
CRISPR Cas9 genetic engineering kit – $150
The emergence of these biohackers both bring positive effects to disruptions, such as the emergence of crowd-sourced study groups to bring much-needed biomedical advances at a low cost (e.g. cheaper alternatives to penicillin). Yet, simultaneously, playing with the genetic code of humans and animals under no ethical standards and supervision can cause irreparable damage and discredit the industry and bring official studies to a slowdown with stronger regulations.
Human DNA alteration, the emergence of Designer babies
CRISPR has proven potential to remove heritable diseases from the human genome by making selective cuts in fertilized eggs. With the growing efficiency of in-vitro fertilization procedures, pre-implantation genetic testing becomes more and more feasible. Through these tests, we will be able to deduce a lot of characteristics about the genetics of the person. As portrayed in the Netflix documentary of human nature, making selective cuts, additions and changes into the genomic code could mean the disappearance of genetic conditions and diseases such as sickle cell disease, Crohn’s Disease, Down Syndrome, Alzheimer’s, AIDS etc.
This might seem far away, yet an infamous experiment by a groups of Chinese scientists in Shenzhen in 2018, who implanted gene-edited embryos that were made to be resistant to AIDS, shows that these applications are right at our doorstep. The woman implanted gave birth to twins who were resistant to AIDS, yet the scientist team was given a 2-year prison sentence and a 1 million yuan fine. This unethical experiment shook the scientific community to its core and strengthened the international rulings on CRISPR altered human embryo gene-alteration experimentation.
The removal of diseases is not the only thing scientists and companies are interested in. With increased knowledge on the function of different genes, we are approaching a reality where gene-editing in babies for desired physical and mental attributes becomes more and more of a possibility. Indeed, a close connection to the 1997 classic sci-fi noir film, Gattaca, where humans were able to define every single aspect of their child, creating new bridges between the wealthy and the poor, where money was not only the only difference between the classes. Currently, (without the use of CRISPR) by using human genome identification in embryos, a fertility clinic in California, USA, allows parents to choose the eye and hair colour of their child by comparing different fertilized embryos.
More complex attributes such as strength, intelligence and creativity are not decoded, due to different sets of genes having part in this and the effect of epigenetics (genes turning or off due to environmental effects over time). Nevertheless, fast and impactful advances in AI and large databases with human genome data will provide us with deeper insight on the building our building blocks and what exact changes to make to achieve our desired results. This will open a world of possibilities in the alteration of the human genome for the years to come, yet many have posed the question to what extent it is up to us to have control in this. Would it be ethical to genetically engineer our offspring? Should these changes be made to future generations as well? How would pricing for such a disruptive innovation work?
There is also a movement for a moratorium (worldwide prohibition or freeze) on clinically using germline editing technology on humans. Considering its large benefits, it is hard to assess whether this technology will bring more good than bad. With fears of it only being available to the rich or of it negatively impacting the genetic code of the human race down the line. Nevertheless, global competition and lack of trust make this a not very likely scenario.
What is your opinion? Should genetic changes be passed down generations? Should all diseases be removed? Would you change your own genetic code if it were a possibility? What would you change?
References:
https://www.labiotech.eu/crispr/crispr-technology-cure-disease/
https://medlineplus.gov/genetics/understanding/basics/dna/
https://medlineplus.gov/genetics/understanding/testing/uses/
https://apnews.com/press-release/pr-wiredrelease/5c6893c18d5c79e1d8aaf5e13a7dc86c
https://www.the-odin.com/diy-crispr-kit/
https://nerdist.com/article/20-year-anniversary-gattaca-genetics/
Dear Nicolas,
Thank you for this very detailed article. You touch upon a topic that represents the foundation of human lives. It is not surprising thanks to Moore’s Law that the price of such technology is decreasing. While on one hand it seems like a great idea to be able to cure some sickness and make and create humans that would be able to defend viruses. On the other, I believe that we shouldn’t be involved in nature that way. This will come with lot of social problems, where a bigger difference will exist between those who can afford these types of technologies or those who can’t. It will also negatively impact the economy with people less needing healthcare or insurance. Furthermore, the growth of population might increase even more that the earth won’t be able to sustainably continue supporting us.
Hi Amandine!
Thank you for your response, some thoughts:
The healthcare sector is under much strain both from the demand and supply side, with people having to wait months at times for treatments and spending ludicrous amounts of money for treatment, at the same time hospitals are very often understaffed with staff doing 12/15 hour shifts. Besides that, the economic strain on companies of employees on sick leave might be higher than the benefit within the health sector. Even though a large shift in this sector could mean the loss of a lot of jobs and economic activity, I wonder to what extent this will be compensated with a healthier workforce and a less congested/ more efficient healthcare sector!
Population growth and these advances might indeed clash creating a yet even bigger problem in the populous, yet at the same time could provide to be a salvation for the western countries and economies. As countries become more advanced birth-rates go down (for example, Europe as a continent has a negative birthrate). This might make the introduction of the treatment dependent on the economic/developed state of the world, which will be a very hard thing to assess!
I wonder, if the technology were to be available to everyone, at a very cheap cost, would you still be against it? Interested in hearing your thoughts!
Wow, this technology is quite frightening. The ability to change one’s genetics takes away a lot of the variation and randomness that makes us who we are. Although there are many benefits to changing one’s genetics, such as eliminating hereditary diseases as well as genetic anomalies that may be dangerous. However, there should be a limit to the amount of modification that may be required, such a specific prerequisite, such as a life-threatening condition or something, but not for no reason.
Hi Morad!
Thank you for your response. It has been argued that there should be a line drawn for the actual applications, yet the moral argument becomes more complex when thinking about where this line should be set. What if your disease weren’t life-threatening enough? Should color blindness be treated? What about dwarfism (some people with this condition actually say they are happy with it)? What about alopecia? Where people are not able to grow hair. This can be considered a non-threatening condition but it has also proven to have considerable mental problems alongside it, to what extent is it fair to say its not life-threatening enough?
The question also falls on who should set this limit, lets say the Netherlands draws a line but USA doesn’t or sets the line further down, wouldn’t you then be creating social inequality in the population as only rich people will have the resources to go to the areas where these treatments are legalized?
Thankyou for your intersting and extensive article. The topic is both scary and fascinating at the same time. However, the word scary is still more representatitve for me at this moment. However, this might also be because we are still ‘far away’ from these types of DNA alterations and modifications, to be happening on a large scale and in our close surroundings. Right now, it seems so unechtical to be able to determine the looks and characteristics of our children. It sounds bizar to be able to create a customized baby.
However, what happens to the world if the population continues to grow as it does right now, all the people with diseases are kept alive due to medicines, people keep on reproducing on and on?
In the documentary “A life on our planet” David Attenborough touched upon this topic aswell. He thinks the population growth must slow down significantly.
New questions can be raised. Might this future modification of DNA play a role in decreasing the population growth? Consider the example of countries such as China, where there exists the gender preference issue of son preference. What if parents could pick the right gender, so that they do not have to try again? I think this might sound very unethical and extreme. However, it might be food for thought.
Hi Emma!
Thank you for your insightful comment. I have added the documentary to my watching list!
It is true that the applications are not very widespread yet, for example, the over 2 million dollar treatment for spinal muscular dystrophy. (https://www.forbes.com/sites/joshuacohen/2019/06/05/at-over-2-million-zolgensma-is-the-worlds-most-expensive-therapy-yet-relatively-cost-effective/#24857eb045f5) shows that the treatment is far from “easily affordable” as is many times argued.
It is a fair argument to think about overpopulation in this scenario, especially in areas where the birthrate is still booming, the early release of this treatment could prove to have huge negative consequences. As well on the effects that it can have on what our population is going to look like. It is interesting to consider an example from the documentary unnatural selection, where they discuss that everyone would choose to have children with blue eyes, yet in countries like Sweden having brown eyes was actually rarer and more popular. Would these preferences offset each other?
Hello Nicolas,
I really enjoyed reading your article. I believe that this technology can solve a lot of problems in society. If it were to become readily available for the average person, it could greatly reduce medical costs and improve the quality of life for people who would experience genetical disorders without this technology. I even understand genetically modifying your children to be as perfect as possible. We all would want the best for our kids and generations to come. However, I believe that playing God or Mother Nature can come with many consequences. If one country would start allowing their population to edit their children’s genetics, it may force other countries to do it as well. In the case of enhancing the DNA of our future generations by selecting “superior” genetics, I believe no country would want to be left behind. Therefore, I share a lot of concerns expressed in this post about the safety of further developing such a technology. Additionally, one of my main concerns is that economic inequalities would likely lead to unequal accessibility to designing your own baby, furthering societal inequalities through genetic manipulations.