The practice of crowdsourcing—obtaining data, ideas, or services from large groups of people—is nothing new. Whenever a website asks you to prove that you are human and not an internet bot by translating a distorted text image (called a CAPTCHA), you are actually often helping to digitize words from old books that cannot be deciphered by computers. When businesses want to solve a problem for which they don’t have the proper expertise or sufficient funding, they offer incentives and prizes to people around the world who are willing to try to solve it themselves. Increasingly in the past few years, researchers in the scientific community are recognizing this potential and looking for ways to harness the power of the internet to connect with and gather contributions from a large group of people.
How large, exactly? For Dr. Matt Huentelman, head of a Neurogenomics lab at the Translational Genomics Research Institute in Phoenix, the magic number is one million.
Several years ago, Dr. Huentelman contributed to a research study led by the University of Zurich that screened 500 people for memory ability, took the top and bottom 25% of performers, and after genetic testing, found that common alleles of a gene called Kibra are associated with short-term memory. This finding was of particular interest to scientists and clinicians who have long been baffled by the causes of short-term memory loss, and it inspired Dr. Huentelman and his colleagues to imagine what they might find if they increased their cohort from 500 to one million people.
Now, he and collaborators at the University of Arizona, capitalizing on the knowledge that short-term memory loss is among the first detectable signs of Alzheimer’s disease, are looking to accelerate brain disease research by searching the world for individuals with the best and worst memory performance—and they are using the internet to do it. They have recently unveiled an exciting and innovative new project called MindCrowd, the first research project of its kind to use web-based memory testing to screen the public on a large scale. The goal of the project is to find genetic markers related to learning and memory, and, eventually, one could imagine, to develop drug therapies that would turn specific short-term memory genes on or off.
MindCrowd, in its first phase, is looking to collect data from one million individuals, and in its second phase, to request additional tests and a saliva sample from best and worst performers, whose DNA will be analyzed using next generation sequencing.
Dr. Huentelman’s group has specifically worked to ensure that participation is quick and easy. On MindCrowd’s web interface, users are guided through a few simple tests of attention and memory, and then receive a score and can see how they compare with other people like them. This helps create an inherent incentive for participants to invite their friends to take the test and compare scores; MindCrowd’s success will depend on this kind of viral sharing and social media networking.
What makes MindCrowd distinct from other crowdsourcing projects is its accessibility: anyone can contribute and play a part in curing a deadly disease. To that end, this project has the unique potential to generate a public spirit of collaboration and collective contribution to scientific discovery. Dr. Huentelman is particularly interested in this aspect of the project: “I think we’re going to build a community of a million people who are interested in research.” He acknowledges that these people may be drawn to MindCrowd for different reasons—some may want to test their memory performance, others may have lost a loved one to Alzheimer’s—yet he believes that in the future, the existence of such a community would provide researchers with unique opportunities to ask new questions and gather information from the public on a large scale.
Those interested in learning more about MindCrowd and taking the test can access their website here.
—Nicole Bassoff ’16 is currently a freshman in Wigglesworth, a future resident of Adams House and a prospective MCB concentrator.