After the 2020 Nobel Prize in Chemistry was awarded to Dr. Jennifer Doudna and Emmanuelle Charpentier for “ the development of a method for genome editing”, I spent 2021 reading, learning and being amazed by the potential this technology had. Along the way I also found that there are possible ethics questions that may arise with this technology’s growing maturity.
On searching I found this book which apparently talked in detail about the ethical questions. The book did not disappoint. It does a great job in explaining the ethical quandary surrounding CRISPR and its applications.
To set the baseline while CRISPR may appear to work at first - it may take years even decades to learn about any possible side-effects. Since it requires gene editing (modifying a gene) theoretically there’s a possibility of any conflicts with gene expression or any unwanted, unpredictable off-target effects. And it is possible that these issues will be caught after a few years even though after the treatment the person may look fine, healed and healthy.
Somatic = Non-reproductive i/e non-heritable
Germline = Heritable
Normally, any research to be successful has to yield a treatment that is both SAFE and EFFECTIVE at the same time.
Currently, there are many trials/researches being run by universities and pharma companies. However, as the author rightly points out that even though somatic cell human genome editing is funded by the public, the irony is that the costs of any such therapy may be outside the reach of an average person. That in itself is the first major ethical question - affordability. Haves v/s Have-nots.
People with rare diseases are often a small segment and thus the research on their diseases and cures is often less prioritized. Pharma companies usually fund projects based on the market size and even when they come out with a treatment the prices can be exorbitantly high.
For example - in 2015 a drug named Glybera went on market with a price for one million US dollars for a one-time dose. The drug was a failure due to limited demand and high price. Similarly, for a rare eye inheritable disease affecting one-two thousand people in U.S states a gene therapy was launched by Luxturna in 2018 with a price tag of $850,000 ($425,000 per eye).
These examples as the author highlighted indicates that any treatments arising from the research will remain out of reach of most people. Even though the technology may mature and become widely available, it probably won’t be accessible to people in countries where the per capita income is much lower than in the U.S.
Another ethical question is choosing between Somatic v/s Germline editing.
Somatic treatments cure a disease in a person but won’t stop it from being transmitted to the off-spring thus requiring the same treatment cycle to be repeated again.
However, with germline editing a disease will cure the disease and also ensure that it is no longer passed down to the future generations. The proponents of germline editing advocate it because it would be futile for the treatment to be repeated again on the offspring and there might be less costs if the treatment doesn’t require it to be repeated.
Ethics of Genome Editing
The debate around ethics of genome editing rests on the distinction between treatment and enhancement. For example - if peak athletic performance is a result of complex environmental and genetic factors, then why not improve on both fronts? Athletic performance has been linked to the MSTN gene.
On the other hand, if genome editing is used to provide people who are already at the tall end of the spectrum or are just average, a few more inches to outperform on the basketball court - that would be an ethically questionable form of enhancement.
It basically boils down to the distinction between ethically questionable and ethically unacceptable. All treatments are enhancements but all enhancements are NOT treatments.
Also, genes do NOT single-handedly decide a trait. Trait is a result of genetics and a complex web of environmental and genetic causes and influences that include everything that happens since conception.
Genetic enhancements could greatly increase the gap between haves and have-nots in the world. It would introduce a genetic divide that mirrors the current unjust economic and social divide between rich and poor individuals and nations on top of the natural lottery.
Also, use of genetic modifications will endanger the small, reduced population with imperfections. With fewer children born with so-called undesirable genes/traits - life will become harder for children who actually have them and their families. In addition to discrimination, stigmatization and marginalization - it'd mean less opportunities for people to come together to advocate and demands for resources. The author gave the example of deaf community.
There’s very vigorous debate and interesting arguments around having gene editing for kids/babies. Author reminds us that we live in a competitive world. Parents try to provide their children with almost anything to aid their development. And with any consumer goods - some people are able to afford it OR some parents have to go under debt to get it done OR some are simply not able to afford it. Same is bound to happen with germline editing or even somatic editing.
I liked and seem to agree with the author’s prediction that there will be “a cycle of initial condemnation, followed by ambivalence, questioning and limited use, followed in turn by change in public perceptions, advocacy and finally widespread acceptance.”
Non-health related heritable genome editing would follow the same pattern :
Initial condemnation -> ambivalence/questioning/limited use -> Change in public perceptions/Advocacy -> Widespread acceptance.
However, there is no denying that there is real danger that this technology turns into a modern eugenic project sold in a new private form of “democratic consumer culture”. Eventually, prejudices of people will come to the surface in use of this technology as they will decide what genetic changes in their offspring. Social norms & prejudices that classify those traits as desirable or undesirable.
Unequal access to this technology will seriously challenge the idea that "We All Are Created Equal".
It was interesting that the author referenced A Brave New World where Huxley led us to believe that when it came to our genes/reproductive futures - our worst nightmare was a government involved in procreative activity and a society that devalued individual decision making.
Insurance
Can/will persons with enriched genomes willingly disclose this info to insurance companies in exchange for lower insurance premiums?
Research, Progress in Science and Ethics
The author in my view rightly critiqued the current model where scientific research in healthcare - results of studies are taken over by commercial interests to be repackaged and resold to the public for profits.This almost ensures that the taxpayers who funded the research never benefited from it.
It takes 12 years for a drug to be approved. And 7 years for a medical device to be approved.
The author points out that the common refrain that Ethics hasn’t kept pace with Science is that it reinforces the notion that ethics is burdensome.
Also, there was a mildly interesting section about should scientists just research and work to contribute to the fountain of knowledge OR should they wade into policy debates and take positions?
My View
My view on genome editing is that it is definitely going to pick up speed and become widespread in the coming decade. There are already many clinical trials underway on how changing/editing a single gene can reverse/treat widespread diseases like Cholesterol and so on. The risks of editing or silencing a gene may not surface until many years in a person. However, this technology is here to stay as companies try to convince the FDA for approval. Eventually, some drug will be approved and the low simmer debate around ethics will suddenly be the main spotlight. That’s where this book is such an interesting read. Lots of nuance and great arguments from a bioethicist point of view.
