National Institute of Health Wants Your Blood, Urine and “Data”- What is Next?
In a recent publication, National Institute of Health (NIH) announced launching an initiative called “All of Us program”. This highlights the first of a kind move by the institution towards the personalization of medicine. Although it contains a few controversies, still the more interesting is their pick of population target; the underserved communities. Their rationale behind the selection is winning back the trust of a group of citizens after a long period of mistreatment brought upon them by the government! Therefore, to rebuild the fading trust they require enrolling over one million participants in the program. The study would implicate taking six vials of blood from every partaker, urine sample, waistline measurement, access to personal electronic health records, data mined from the wearables sensor attached to individuals wrist, And probably Social Security number!
The details of the proposed study “All of Us” Research Program is published on August 15, 2019 edition of New England Journal of Medicine 2019; 381: 668–676.
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The National Institutes of Health, recently awarded $4.6 million in initial funding to a health technology company in Burlingame, California, to initiate the first nationwide genetic counseling resource.
National Institute of health’s vision is apparently meant to be the reflection of advances in genomics and biosensors technology that according to the agency have set a stage for refined taxonomies of the disease marked to help augment prognosis, improve ongoing clinical interventions, and assist in the shaping new therapies. Its mission is to enroll at least one million individuals who are willing to share their private information via electronic health record (EHR), donate biological specimens for genomic study and other laboratory assessments. It also requires them to respond to a series of survey questions, and concomitantly have standardized physical body measurements taken. Participant’s data will most likely be monitored in real-time from sensors and mobile health devices and everyone will be contacted for impending research prospects.
It seems peculiar as one of many concerns about the study being conducted by NIH emphasis on stablishing public trust in exchange for sharing enormously large quantities of critical information with the authorities; organizations which thus far have shown little or no intention to efficiently protect sensitive information. Taking this one step further, the curiosity flag would inevitably go up with the agency’s selection of the underserved communities to engage the initial source of volunteers for the study.
How NIH is planning to implement under the personalized or precision medicine in order to re-win the trust of those communities mistreated in the past is by itself the matter of uncluttered controversy. There are few layers comprising the aforementioned altercation including One- definition of personalized medicine and precisely what it signifies; Two- Data security, ownership and HIPAA compliance; Three- mission and vision asynchrony; Four- the underrepresented population.
To understand what personalized medicine is, one needs first to understand the value of particular medical care or service. There are a variety of definitions to what Quality and value stand for as we try to apply that within the healthcare framework. But almost invariably all tend to marginalize their true meaning. Quality and value of a service or product are not one-size-fits-all scenarios, as it must be determined, tailored and adjusted according to the individual needs and preferences in a particular place and time. Concomitantly, is vital to conceptualizing the notion of risk and benefit ratio being as the fundamental driver of any personalized medical care.
Personalized healthcare, personalized medicine, and precision medicine are the top three buzzwords we commonly hear in the current healthcare arena. The age of precision medicine dates back to 20 years when Dr. Francis Collins released a foundational document on the Human Genome Project. Since then, the idea of precision medicine has been used interchangeably as personalized healthcare and personalized medicine. Dr. Collins genomics theory is purely on the concept of Genetic reductionism claiming that understanding genes is critically sufficient to understand all aspects of human behavior. In my opinion, his perception of personalized healthcare is a matter of great controversy. I have touched on the abstraction of personalized medicine, healthcare and precision medicine in a few of my past writings. Therefore, I have no intention of diving deep into the details, as have provided links to some of those within this article. But I must emphasize- the core mission of the “All of us program” is another example of misrepresentation of what latter three definitions stand for. Personalized healthcare, medicine, and precision medicine do indeed overlap within the scope of their specific application role; nevertheless, by no means, they refer interchangeably to the same enactment.
The critiques of NIH mission
The fact is that what the definition of personalized medicine is and what its scope entails is indeed a matter of concern. The notion of personalized medicine in the NIHs proposed study is merely pointing to “precision medicine” by merit of its primary concentration on genomics and DNA sequencing. In realism, there are many dimensions to personalized medicine pertaining but not limited to ethics, personal choice, quality, and individual values. Collecting DNA for sequencing and utilizing deep learning algorithms to investigate is fundamental to the successful harnessing of genomics science. But data security, ownership and HIPAA compliance are still a matter of ongoing problems. The plan of action is currently ill-defined to prove that the agency’s primary effort is towards protecting patient’s sensitive data.
Making Advances in genomics and biosensors is merely towards satisfying the agency’s true mission by building database silos under the rationale of establishing trust among the underappreciated community, hence denoting to a double standard.
The big picture
The obvious is the NIH’s focus is primarily genetic sequencing and expanding upon the genomic database. It will also flourish the availableness of information to other organizations and agencies that have little or nil to do with precision medicine. The corporate data mining rush is real. Every industry is implementing various methods of data collection strategies at little to no cost. They want it now, and they intend to move fast before legislators take the necessary actions. For instance, the car industries pursuing driverless car technology on the pipeline have implemented low-cost scooters in every corner of the metropolitan cities which serve as mapping tools for the cities and data mining instruments. Healthcare is a no different target when it comes to Mining for raw data.
Health technology companies are polishing off consumers’ DNA. Lawmakers are either reluctant or simply incapable of stopping the trend. Software and technology companies are openly trading details about citizens online search histories, whereabouts, efforts such as getting pregnant and habits that are destined to devastating consequences in the long run.
Between the lines
Data mining is the 21st-century gold rush. The access to patient’s health information by the way of wearable device meta-data, clinic encounters and laboratory test results is the free conduit to billions of dollars of individual proprietary information at the patient’s disbursement. NIH partnership and misleading research initiatives are unethical and must be held illicit. Underserved communities are desperate, as they serve vulnerable prey for the data mining industry and information exploitation. It will leverage pharmaceuticals and insurance industry fiscal gain with the help of government lobbyists to secure the interest of corporate cartel.
Genetic reductionism is a cheap rationale to exploit individual privacy and sovereignty. A similar approach can be witnessed regarding stem cell research and regenerative medicine industryAmazon’s Alexa is another example where The entity under the partnership protection with British National health system will pit for an endless source of personal data at a fraction of the cost.
Fishing from murky waters is descriptive of the National Institute of Health’s initiative by presenting the visionary ideals in asynchrony with no transparent practical ambitions. The plan describes the perfect scenario to whipping citizens to replete the corporate accounts with billions of dollars’ worth of information using political adversarial effort. The schema which will facilitate the gigantic amount of metadata to be shared across the web of corporate monopoly and kickback towards building a consumer commodity, artificial intelligence technology paid for by the consumers, to begin with, and potentially used to further control the masses.
Big data and Stem cell genomics are two scientific disciplines working in collaboration towards facilitating its rapid expansion due to the dramatic decline in the cost of genome sequencing and strategies to access private citizen tissue samples.
Patient distrust is real and just. But it is hypocritical to presume winning back their trust will entail more scamming them for valuable data whether private and personal.
The concept of genetic reductionism is extreme. It contradicts what Hippocratic personalized medicine stands for, i.e. the notion of “do no harm, heal sometimes, treat often and always comfort”.
Precision medicine represents the tools, strategy, and science collaboratively working to the enhancement of personalized medical care. Genomics and other technologies can be classified under the category of precision medicine. Consequently, they all collectively are the subcategories of personalized healthcare.
The idea that precision medicine requires mining for patient data is not the subject of concern. However, the major issue is about what, whose information and how the data will be collected, manipulated and shared. Additionally, is vital to determine the primary legitimate owner of the extracted data. Until mentioned questions addressed community distrust would be understandable and justified. Those who mistakenly trust are probable incognizant of the downside magnitudes of their action by virtue of the Non-transparent landscape of the “All of Us Program” initiative.
Originally published at https://www.datadriveninvestor.com on September 7, 2019.