An expensive US National Institutes of Health program is coming up short of results to justify its enormous budget, according to some scientists.
Three years ago, the NIH announced a major initiative to collect, organize, and analyze detailed health and genetic information of Americans in a program dubbed “All of Us,” also known as the Precision Medicine Initiative. The initiative is intended to harvest information from one million Americans, following them over at least a decade, using blood and urine samples, medical records, personal food diaries, and readouts from biotech toys like Fitbit smartwatches, to compile an accurate and targeted data picture of American health, disease, and fitness. A great deal of money, time, and expertise are being dedicated to this project.
Three years into the program, not a single person’s genome has been sequenced, and the expensive facilities have only worked on small pilot projects.
According to the program’s ambitious mission statement:
“The All of Us Research Program is a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.”
However, a number of scientists and participants have raised concerns about the goals, the costs, and the lack of progress. The plan to compile a health database specifically for Americans has value, but could duplicate other health and genome-collection work already in progress by smaller entities such as companies like 23andMe, Geisinger Health, and others. Whether or not this is the best use of the NIH’s limited budget – or whether it is a charismatic project that is designed to elicit funding – is a matter of some debate in medical circles.
Unusually large amounts of money have been budgeted for the effort: According to the New York Times, the budget was $230 million for 2017 alone, and an unheard-of $1.455 billion has been budgeted by the US government for the next ten years. But despite the commitment of funds, bureaucracy has limited the program to a mere 17,000 beta testers – only 1.7% of the million-person goal.
Dr. George D. Yancopoulos, president and chief science officer of the biotech company Regeneron, which has been contracted to help with sequencing for this project, has expressed concern about the paucity and quality of samples submitted so far. The samples, Yancopoulos explained, contain only the simplest data, and do not include genetic sequences.
Another issue raised by critics is defining exactly what the NIH will do with this information. However, many scientists view that as a non-concern. Like the human genome project of a decade ago, a database of health information is a tool that can be used for future endeavors.
“We keep looking at diseases in isolation,” says Eric Dishman, director of the All of Us initiative and himself a survivor of kidney cancer. Dishman hopes that by looking at entire genomes, the interconnections between diseases – and genetics – can be better understood and treated.
Dishman and other scientists are much more optimistic about the future of the project. With over 70 enrollment sites launched across the country, more data will be collected, analyzed, correlated, and will be used to increase our understanding of who gets sick and why, and what medicine can do to anticipate diseases such as diabetes, as well provide better insights into prevention and treatment.