An Open Genetic Support Community
Requested amount from Knight News Challenge:
$150,000Total cost of project including all sources of funding:
$150,000Expected amount of time to complete project:
1 yearThe genetic revolution has finally reached the point where an individual can obtain personalized genetic information. Recently the cost of such information has dropped to the equivalence of a doctor’s visit. We propose to develop a free and open digital portal where individuals can upload their genetic information from any source to collaborate and connect with similar people. To bootstrap this effort we plan on working with local community groups in the greater Hartford area of Connecticut to provide free screenings. The users will join digital communities which will provide group support, quick and accurate dissemination of recent and relative information, and a structured peer and expert vetted knowledge “wiki”. Additionally the portal will contain integral mechanisms by which brick and mortar support communities can identify new members, provide region specific support, and if applicable connect individuals to sources of local qualified genetic counseling.
The company 23andMe, and many more in the future can provide low cost genetic screens. The raw genetic information and analysis they provide is available to the individual with little or no restrictions. However the average individual does not have the knowledge or skills to perform their own analysis. Therefore we propose to create an open source, non-profit foundation which enables users to privately and securely upload genetic information, and enable qualified and publish analysis to be run on their data. Our foundation and web portal will serve as a way to ensure that individual’s genetic code remains property of the individual, and analysis is not tied to one specific company. The results of such analyses will allow the web portal to construct the digital communities mentioned previously.
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What experience do you or your organization have to successfully develop this project?
Students, Scientists and Public Advocacy.
Currently, there are three individuals associated with the Our Gene’s project. Two of whom are pursuing graduate degrees in computer science and the third working for a non-partisan Connecticut State agency improving women’s rights. One of the students is completing an M.S. in Computer Science from the University of Connecticut; the other is enrolled in a PhD program in computational biology at Columbia. They both are actively publishing in the field of genetics, and one has created an open source tool used by many individuals in genome wide disease association studies. They both have worked internships creating web applications, including the Standard’s and Poors website.
The three project members provide a combination of talent and experience needed to complete such an undertaking. The two students are completing degrees which has emerged them in the field of computational genetics. Their peers and collaborators have hands on experience with some of the commercial ventures providing genetic data. Their schooling has allowed them to not only understand and solve the problem, but to network with leading figures in this area of research and commercialization. The member who is currently working a government position provides a foundation of skills which will help navigate the legal and organizational problems that will surely arise. Additionally as students, the members have access to university services, such as an intellectual property and rights law clinic.
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