“Lots of people think of the way genes influence you in terms of eye color or blood type, where one or very few single points in the genome decide these things…but most things have hundreds of genes or tens of genes all influencing them,” says James Turner, participant in the Personal Genome Project and Treasurer and Chairman of the Open Humans Foundation. This is just one among many of the insights he’s learned during his involvement with these projects.
The Personal Genome Project was started at Harvard Medical School in 2005 with the goal of increasing the number of whole genome sequences—which is a significantly more thorough and fruitful process than those used by Ancestry and 23andMe—and to link that genotypic data with correlated physical expressions or phenotypic data. When someone decides to submit information to the Personal Genome Project, they are anonymously making that data public to any researcher who could make use of it.
The Open Humans Foundation developed as a descendent of the Personal Genome Project and takes a more nuanced approach to the same idea by allowing participants to select whether their data is available to everyone, making use of data inspired by the Quantified Self Movement (e.g. Fitbit/Apple Watch, diet data), and providing new tools for data transfer from personal devices to data banks.
Turner makes for an insightful and informative conversation, discussing challenges for the medical community and concerns people have about making their genetic data public, the 1000 Genomes Project, the NIH-funded All of Us Research Project in which data sets on one million people are being tracked and collected, genome-wide association studies, the plummeting price of genome sequencing and how this is affecting the field, and so much more.