I’ve been reading a book personalized medicine called Genomic Messages by George Annas and Sherman Elias. It is an excellent book that gives the lay of the land when it comes to genomics as it relates to the everyday person.
In some regards, this book may be considered not that recent as it was published in 2015. It seems as though everyday there is a new headline of a breakthrough at a university for genetics or translational medicine in relation to curing disease. And, though these things may be true, there are significant ramifications of moving forward with these discoveries and technologies.
Along with the word blockchain and AI — personalized medicine or precision medicine has joined the ranks of hype. In fact, it has been the dream of many companies for ages. Who wouldn’t want to sit on people’s genomes that can be bought and sold for a profit.
The authors’ goal is to provide the reader with a comprehensive picture of what it means to have DNA sequenced for screening and potentially diagnostic procedures for diseases.
Some of the key notes were:
- Privacy is a public good; your DNA is not.
- No one should collect, store, analyze or use your DNA, or information derived from your DNA, without your permission.
- Sequencing cancer genomes holds promise for personalized medicine.
- Labeling a child genetically abnormal can transform a healthy child into a sick child for life.
- Racism and racial stereotyping have plagued genomics since its beginnings.
- Foods are analogous to drugs, and we are still learning how our genes can determine how we react to food and drugs.
- It is not nature versus nurture, but nature and nurture (and our microbiome).
There are so many more gems written between these covers. However, from just these bullet points — the notion of getting your DNA sequenced for fun has deeper societal implications. We should place more emphasis on our uniqueness and understand that we do have the right to not know.
Not knowing every single thing about your DNA and potential for disease is not necessarily ignorance — it is living your life as you see fit. It’s a form of freedom.
If you are interested in learning more, I encourage you to seek unbiased information. It’s the only way to get educated.
We haven’t unlocked the full potential of personalized medicine — and you better believe that whoever owns the keys to the data, has the money in their pockets as well. We should be vigilant to ensure that it is the health consumer who reaps these benefits.
There needs to be more awareness about what it means to have our DNA sequenced, stored, and analyzed by a third-party. Our DNA is the blueprint for many things that make you, you. Don’t forget that.
We are in the age of big data which also means big genome data. Where there is hype, there is emotion. Where there is emotion, there are quick actions that can be made without understanding the full picture and implications for actions. We must tread with caution — especially when it comes to the very nature of our biology.