The Human Project
After Indiana Jones recovers the Lost Ark, it is taken by Army Intelligence agents who insist it is being studied by “top men.” Instead, the Ark is locked up in a wooden crate and wheeled into the back of a warehouse, where it waits untouched among millions of other secret-filled crates.
Sadly, many social scientific papers today are destined for a similar fate.
“When you decide what you want to study in psychology or neuroscience or sociology — you find 300 people, you bring the data back to the lab, you write a paper about it…and then you give it to NIH, where no one ever looks at it again,” says Dr. Paul Glimcher, Director of the New York University’s (NYU) Institute for the Study of Decision Making (ISDM).
But what if there were a way to crack open all the crates, and perform research in a way that reveals everything altogether at one time — and in doing so, discover something that could not be seen before? Could we recover the Lost Ark?
This upcoming fall, Dr. Glimcher, the Kavli Foundation, and the ISDM will start recruiting for The Human Project — a 20-year, 10,000-person study, bent on creating a vast database of all aspects of the human experience. The scale of this study is more ambitious than any before it. And if it succeeds, it carries the potential to transform scientific research forever.
The Human Project is a telescope turned away from space and back towards humanity. It is the quest for a complete understanding of human health and behavior. It is the coming together of advanced technologies — (such as bio sample analyses, Geographic Information Systems, and smartphones) — and the highest academic standard for longitudinal survey research.
The main questions the Human Project intends to answer are about health. Researchers today understand that there simply isn’t one cause for asthma, diabetes, hypertension, obesity, or depression. There are thousands of interacting biological, cultural, and environmental factors that combine to cause a person to be one way or the other. The Human Project intends to examine all of these factors at once, with the understanding that the treatment for these diseases is probably a combination of behavior, social, and medical interventions.
“We know enough to know that we need more data to know better,” Dr. Glimcher says.
Once participants are randomly recruited for the study, they must go through multiple information sessions in order to guarantee they are properly informed and able to give full consent. Then, they complete an exhaustive medical exam. Everything is tested — blood, urine, hearing, lung capacity, IQ. Every once in a while, they will get tested again. The final piece is a simple smartphone app. This app monitors certain aspects of daily life, such as where one is located or how many steps one is taking (the kind of data, by the way, that phone companies already store and sell to other companies). Participants also use the app to answer simple lifestyle questions everyday, which adds up to only a couple of minutes of commitment for participants every week.
The goal is not only for the process to be as simple and effortless as possible for recruits — but secure, as well. Dr. Glimcher and the rest of the Human Project team know that if the data isn’t stored safely, they risk the possibility of a scandal, or even worse: future policies restricting this type of scientific research.
In order to ensure the security of the data, scientists will only be able to access it after an extensive process of approval. They must physically go to the data center, pass a series of identity checks, and are monitored the entire time. Only pieces of information will be accessible at a time, so that only the abstract level of data required to answer a particular question is available. None of the data can be taken out of the center.
“We have purposefully made it a pain in the butt for researchers to use the data, but that’s the price you have to pay for people to trust you with their data in the first place,” says Dr. Hannah Bayer, Chief Scientist for ISDM.
Dr. Glimcher was inspired to obtain data similarly to how the Sloan Digital Sky Survey obtains astronomical data: “Twenty years ago, astronomers would book time on a telescope and pan it around looking for quasars until they’d find one — that is, until Dr. James Gunn decided that was exactly the wrong way to do it.” The Professor of Astrophysical Sciences at Princeton University pioneered the Sloan Digital Sky Survey, which used a wide-angle optical telescope at the Apache Point Observatory to slowly pan across the sky and capture as much as possible at once. The result was a vast, comprehensive database, which has logged observations of over 500 million objects.
Astronomers can easily look back on the Digital Sloan Sky Survey and say, “that was the one that changed the game.” The same can be said of biologists looking back on the Human Genome Project, which for the first time created a databank of genetic information for thousands of organisms.
One day, the same might be said by social scientists about the Human Project.
The most valuable information to be gleamed from the Human Project may be impossible to predict. Before the Framingham study was launched in 1948, it was universally accepted that smoking cigarettes was not only completely harmless, but even healthy. Then, the National Heart, Lung, and Blood Institute recruited thousands of participants from Framingham, Massachusetts, to take part in a study that involved routine physical examinations and interviews for many, many years. So many years, in fact, that the Framingham study continues to this day — with the third generation of participants.
“Years into Framingham, to their horror, researchers discovered that cigarettes were killing everyone,” says Dr. Glimcher. “They would have never guessed that.”
Perhaps, years into the Human Project, we will also discover something that will completely change our understanding of human health and behavior. Perhaps we will finally find the Lost Ark.
