Image Credit: PGP homepage It all starts with Professor George Church’s vision. Church is a core faculty member at the Wyss Institute and professor of genetics at Harvard Medical School. In 2005, he launched the Personal Genome Project (PGP), which collects data on a person’s DNA, environmental background, and relevant health and disease information from consenting participants. The premise of the PGP is grounded in open science, meaning that all this data is publicly available to researchers, who then study the relationship between specific DNA sequences and various displayed traits, like having an especially good memory. This openness is the hallmark of the PGP, described on their website as “a vision and coalition of projects across the world dedicated to creating public genome, health, and trait data.” The PGP seeks to share data for the “greater good” in ways that have been previously “hampered by traditional research practices.” In other words, by being set up so it’s open-access project that allows individuals to freely share their data with researchers, no single researcher can “control” access to the data. By inviting participants to openly share their own personal data, this project allows individuals to directly impact scientific progress. Beyond just an altruistic desire to advance genetics research, Church is conscious of the fact that this process should benefit the participants. In return for applying for the project and undergoing the examination that yields their data, genomes, and biomaterials, participants and their family members gain insight into their memory health and their genetics in general. They could get warnings about potential diseases or learn about a compelling ancestry. This process involves an application and then a medical exam that takes biological samples. Over 5000 people have enrolled in the PGP, meaning that they’re eligible for not only the PGP-Lumosity Memory Challenge, but also for other third-party research studies from around the globe! As Church stated in a 2008 Wired article about the PGP, “Right now, there’s a wall between clinical research and clinical practice. The science isn’t jumping over. The PGP is what clinical practice would be like if the research actually made it to the patient.” So what exactly is the PGP-Lumosity Memory Challenge, and how can you participate? This challenge launched in March of last year and aims to study memory and reaction speed, with the ultimate goal of identifying genetic factors that can help in developing treatment for neurodegenerative diseases like Alzheimer’s disease. The challenge, open to individuals registered with the PGP, consists of six games that measure memory, attention, and recall speed. As exhibited by the video below, the games are a lot of fun! Scientists then analyze participant scores and identify the top performers. [embed]https://vimeo.com/205296619[/embed] Rigel Chan, PhD and Elaine Lim, PhD, members of the Church lab and the Wyss Institute, created the memory challenge in partnership with Lumosity, a platform for Lumos Labs that creates online brain training games. They had specific questions regarding neurogenerative diseases and cognitive abilities, which can be thought of as brain phenotypes: why do some individuals have good memory and reaction speed? What about the people who don’t? How does this all connect to Alzheimer’s disease and other dementias? As Celia Fulton Walden, a liaison for the project, said when interviewed by the SciStarter team, the project is testing “whether such online cognitive games can be used as early biomarkers to detect individuals who are at risk for Alzheimer’s disease. If the memory scores are predictive for disease, the implications are huge – because we will have a fun, low-cost and scalable approach to quickly identify individuals who are at high risk, or low risk (protected individuals). If the memory scores are not predictive, this is good for us to know as well, as it will invalidate the claims made by these online neurocognitive gaming companies. There are many more questions that we will try to answer with this study, but we believe that the first step is to really test the utility of such games.” By identifying individuals with exceptional cognitive abilities through the playing of these games, Chan and Lim can use participants’ PGP data to construct miniature brain models, also known as brain organoids, and examine how they differ from those of patients with neurodegenerative diseases. In these models, the team can sequence, edit, and visualize DNA, modeling brain development and testing hypotheses of neurodegeneration in these models. As Lim said, “What we are measuring is memory and reaction speed because of interesting disease relevance to disorders such as Alzheimer’s disease. We are using the Lumosity games because of the broader outreach to everyone, and not just a small elite group.” This allows anyone who applies to the PGP and has exceptional memory and reaction speed abilities to contribute to meaningful science. Recruitment for the Memory Challenge continues in earnest, and all citizen scientists with an interest in furthering this research are urged to apply to the PGP and then participate in the Memory Challenge. As stated on the SciStarter profile for the project, “Their findings could shed light on efficient memory functions and potentially invigorate research into Alzheimer’s disease and other neurodegenerative disorders.” Though the study seeks to identify high performers, all data points from all participants will be used. So even if you’re not a high performer, your contribution will still be valuable in understanding the totality of the data. When asked about the “greater good” of the study, Fulton Walton said, “For the PGP-Lumosity Memory Challenge, the ‘greater good’ of the study has multiple components. Not only will individual citizen scientists be informed of where they stand in in terms of their memory scores, but also ongoing research will inform us if these scores are predictive of risk for neurodegenerative diseases such as Alzheimer’s. An additional planned contribution to open-access data is to sequence or genotype participants in this study, which would be available to researchers through the PGP.” In the coming year, when the pilot study is completed, the participants will be informed of their normalized memory scores, i.e. what percentile they fall in compared to the other PGP-Lumosity participants. Fulton Walden ultimately pins the purpose of the research as testing “whether these memory scores are predictive of risk for Alzheimer’s disease or not. This will then put the normalized memory scores into context: are they predictors of disease or are they simply recreation?” As Church was quoted as saying in the Harvard Gazette, “Our goal is to get people who have remarkable memory traits and engage them in the PGP. If you are exceptional in any way, we invite you to share your gift so that others can benefit from it.” Put your memory and reaction abilities to the test by enrolling in the PGP and then participating in the Harvard PGP-Lumosity Memory Challenge.
Check out more citizen science projects through the SciStarter Project Finder!