Over the last couple months there has been much talk about Universal Basic Income(UBI), many weighing in on the possible advantages and disadvantage. Depending on who you ask, it triggers a response akin to their political ideology. Today I want to propose a new way of looking at Universal Basic Income (UBI), I believe this approach solves several problems and provide a win-win situation as we approach the age of 'Personalized Medicine'. This proposal seeks to address the lack of genetic diversity/data representation as can be seen from the chart below and importantly answers the question "where the money is coming from".
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Before we go down the rabbit hole, let us understand what currently exist, define a few concepts and lay a framework which we can build on.
For those who aren't aware UBI is a concept of providing citizens with a guaranteed income in the form of periodic payments. It is widely seen as a way of fighting extreme poverty and ensuring citizens have enough to provide for themselves. It is also considered to be one of the best tools to deal with the loss of jobs as a result of automation and the subsequent loss of jobs as artificial intelligence makes many jobs redundant in the economy. Lets now discuss Personalized Medicine.
Personalized Medicine is also known as Precision Medicine is a concept that encompasses healthcare delivery that is tailored to the individual or group base on their unique genomic composition. This concept has gain some traction especially within the pharmacogenomic field as drug interaction and outcomes varies with ethnic group/ population. This is the general direction medicine and healthcare is heading, currently what is practice is "one size fits all" but as the science and understanding becomes greater and better personalized medicine is gaining traction. Lets now discuss Blockchain.
Blockchain is one of the concepts that has been popularize with the advent of Bitcoin. As the name suggest, information is stored in blocks using cryptography and unique methods such as proof of work or proof of stake along with algorithm power this very powerful innovation. There is much more to blockchain and this blog would never do justice in identifying the possibilities, therefore, we try to address the topic at hand. Now that we have a better understanding of these concepts, lets us dive and go down the rabbit-hole of UBI and DNA.
One of the current challenges facing Personalized Medicine and genetic research in general is the lack of diversity/ genetic data. As can be seen from the chat above European ethnicity makes up a greater than 65% of all genetic representation. This is followed by East Asian, South Asian, etc. Lets use the same chart here again, so we can better appreciated the lack of diversity in genetic data.
A chart like this should worry any astute healthcare provider or policy maker given the model of healthcare currently practiced. Currently what exist is a "one size fits all", meaning that much of the drug development and research has been centered around looking at European data. While this approach may benefit people of European ancestry it could put other ancestry at a significant disadvantage as we are currently learning about CYP enzymes in the liver among many other pharmacological interaction. Looking at an ancestry tree gives clues to the overall health of that ethnic group, it also means given their unique polymorphic traits, carry advantage and disadvantage that can explain the varying phenotypic expression we see today. This is indeed a rabbit-hole that we can go on and on about, so its address how money can be allocated for this given proposal.
We would discuss the United States of America as it is one of the countries where data is widely available. Healthcare in the US is a controversial issue as Medicare for all often see policy makers stand behind political/ ideological beliefs as to the way forward. In the USA alone, an estimated 700 billion dollars a year is spent on test and procedures that do not improve health outcomes. This is one of the chief reasons why healthcare is so expensive as insurance company sort through what they can and cannot pay for often times increasing premium and passing on the cost to the customer. Add drug companies to the mix who are trying to get more customers to use their products much of which has no beneficial therapeutic outcome and in some cases side effects only increase the likelihood of using another drug to deal with an emerging symptom. While much of the Europe and the rest of the world has caps and quotas on drug companies and in some cases healthcare becomes a cost of the state, much of the healthcare outcomes can be better realized if healthcare providers are equipped with patient genetic data.
Given this reality, I propose a UBI like system with blockchain technology at the core of it. The guaranteed periodic payments is an incentive to get citizens enroll in such a program. It is a blockchain where proof of data gives you the right to obtain these periodic payment and thus solves the problem of lack of genetic diversity as more and more people from varying backgrounds are encourage to enroll and participate. Governments can take as little as 5% of the Healthcare budget to channel into this program, the rest of the funding comes from drug companies and research labs who need the data to better understand response in ethnic group/ population. Drug companies have an incentive to heavily invest in such a program as it means that drugs can be made to better target population groups and achieve far better therapeutic outcome. A successful drug and subsequent FDA approval means stocks price increases and more inventory for the company, making it a win-win situation for everyone. A program like this makes Personalized medicine available and makes the overall healthcare outcomes more efficient as therapies are targeted and healthcare providers of a greater understanding of the dynamics affecting delivery of care at the genomic level like never before.
This sounds futuristic,a 45 year old patient goes to a particular hospital with complains of loss of memory, the physician ask him if he has been part of the recently launch UBI program of which the patient responds yes. The patient can access his data via internet using his unique log keys and provide the physicians with the data. The physicians can then quickly cross-reference the patient data in the public database looking to see if researchers have tag any polymorphism associated with the patient symptoms. From there, the physicians does routine medical examination to ascertain any other problem affecting the patient. This is where magic comes, if researchers find conclusive evidence of genes associated with symptoms and can be fixed through pharmacological or genomic, companies that offer funding to the UBI program gets first preferences in providing a solution of which the doctor can then recommend the patient. A win-win situation for all patients.
I know this reads like science-fiction but I hope this would have catch the curiosity of some readers. If you like me to dig deeper and lay the ground work of how this can be achieved, please comment below and upvote. If you can, please tip me with the address provided, it would give me the extra drive to dig deeper. There are blockchain that currently exist that can easily tailored to bring this idea to reality. Thank you for taking the time to read this blog.
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Not necessarily. Personalized medicine would lead to the fact that in some cases, where you have lets say a success rate of 40%, you would eventually only treat those 40% after having spend significant money to elucidate why they respond and the others not. So in this example you revenues of the drug would get more than halved - without compensation. But also in a case, where just 10% of patients do not respond to an established drug, do you think the company would spend millions of dollars for diving deep to find out the wherabouts, if overall in 90% all is fine?
Don´t forget that the current challenges in drug development are not the lack of knowledge about DNA profiles, but understanding how to block/trigger certain signalling cascades on the way to cancer or how to find new drug candidates and how to develop them as fast as possible. DNA profiles are not the primary approach for these goals.
The big pharmas who would have the money to stem such a program are unfortunately quite risk avers.
Also not all drugs are affected by the genetic landscape of a patient. Hard to tell the percentage, but I would guess more than 50% of drugs would not improve in performance at all from a better knowledge of each patients DNA.
But overall your concept is very interesting.
For info, I wrote some time ago an article about possible use cases of blockchain in clinical research (german only)
https://steempeak.com/deutsch/@stayoutoftherz/blockchaintechnologie-in-der-klinischen-forschung-wo-stehen-wir-heute
Your point in well noted but there some points I like to clarify, for the above example, I think you are mixing up rare genetic disease with that of diseases primarily found in certain population group. For example, hypertension and diabetes are diseases common among African americans. Nonetheless, you also find it in other ethnic group, what the data is showing in the case of African Americans, its better to treat them as a first line approach using Calcium Channel blockers in the case of hypertension rather than beta-blockers which would work in other ethnic group better. The idea is that drug company has an incentive in targeting research geared toward that population group because of the potential market available to them. Another example is that of Adult T-cell lymphoma/ leukemia which is common in Japan and Caribbean, while it is cause by HTLV-1, its distribution isn't significant among other population group. Researchers can now ask the question is there something is those population group that results in this. There is now an incentive for drug companies because you have Japanese population and 40 million population in the Caribbean. When it comes to rare genetic disorder one can say the potential money needed to invest to find solution isn't worth it but I remind you that medical research has a way of scientist trying to find one solution and finding another.
With regard to your statement "Don't forget that the current challenges in drug development are not the lack of knowledge about DNA profiles, but the understanding how to block/ trigger certain signalling cascades on the way to cancer or how to find new drug...", that statement isn't factual, there is actually a huge lack of genetic diversity as can be seen from the chart presented, most of the data presented primarily comes from someone of European ancestry. This is actually one of the issues currently be targeted to get more research targeted at specific ethnic group and more research to deal primarily with these groups. You can follow the Human Genome Project, lots of data, most of our indigenous tribes data aren't even catalog, we still have all of South American, Caribbean and Africa to cover.
This is probably dealing with another topic but I believe much of what we are trying to find out about our body and diseases are actually written in various group DNA. There are groups that have natural mutation that makes them immune to various viruses like HIV, HTLV as the resulting protein (receptor) is compatible. All these have clinical significance because once you find these among given DNA, there is a potential it can be reproduce in the lab and with the tools like CRISPR, there lots of potential we can solve many diseases are a genetic basis.
Thank you for commenting, appreciate it
Perhaps homomorphic encryption could be of use here. The Enigma project uses that. Homomorphic encryption allows data to be shared and computations done on it without revealing it. That way, an individual could sell access to their genetic information without giving it away completely.