Huge precision medicine initiative from NIH

NIH opens nationwide enrollment for huge precision medicine initiative – By Lev Facher@levfacher – May 1, 2018

Yet, while our government prioritizes this huge project of individualizing medicine, the corporations in charge of our healthcare are trying to create generic standards (disguised as guidelines) to save money on our medical care that ignore individual factors completely. This is one of the most egregious failures of the CDC Opioid Prescribing Guidelines.

A massive precision medicine initiative that has been years in the making from the National Institutes of Health is being rolled out at last.

The All of Us initiative, which will be launched on May 6, aims to compile detailed health profiles of 1 million Americans, with a special focus on communities historically underrepresented in biomedical research   

The program, which began as a pilot last year, is the most ambitious attempt yet to compile health and behavioral data, as well as genetic sequencing, from a representative sample of the American population.

It will collect

  • electronic health records,
  • survey data, and even
  • information from its participants’ wearable fitness devices

with the goal of helping scientists better understand how to craft personalized treatments, seen by many as the future of biomedicine.

It’s “science that gets rid of one-size-fits-all medicine,” the program’s director, Eric Dishman, said in an interview with STAT.

Yet, the moneyed interests that have been investing heavily in healthcare industries are pushing hard to establish standards that are exactly that.

And what will become of all the “best practices”, standardized guidelines?

Will such standards be disregarded when dealing with individual patients?

Will they be followed until proven ineffective before individualized care is offered?

These are excellent questions that should be asked of the high-level executives trying to standardize our medical care.

More than 120 sites are currently online, and the NIH has already enrolled 26,000 beta-phase testers, according to a spokeswoman. An additional 17,000 participants have begun the enrollment process.

Many public health experts say non-representative research samples, which typically skew white and male, have been used all too often in past research and some clinical trial settings. This can have concrete health consequences.

The NIH has stressed that a non-representative sample of the U.S. population would be detrimental to the goal of understanding the behavioral, environmental, and genetic factors that determine health outcomes for all Americans.   

No participants have had their genomes sequenced to date, but the NIH issued a framework in March for funding genomic centers that eventually could be capable of fully sequencing up to 100,000 genomes each year, beginning with a 20,000-person pilot later in 2018.  

Still, Dishman acknowledged the logistical and financial capacity to fully sequence hundreds of thousands of DNA samples is a long way off, saying the NIH’s large need for genomic sequencing capacity could act as a downward cost driver for the technology.

In advance of the rollout, however, Dishman cautioned that not all participants would have the opportunity to have their genome sequenced, at least immediately.

NIH is “inviting people to do the physical measurements and biospecimen,” Dishman said, “but we’ve got to make sure that we’re hitting the scientific goals in terms of the demographic, geographic, and health status diversity.”

Author: Lev FacherWashington Correspondent – Lev Facher covers the politics of health, medicine, and life sciences

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