learn more about the problem
Carlos Bustamante: Genomics has a diversity problem
Keolu Fox: Why genetics research must be more diverse
Alice Popejoy, Stefanie Fullerton: Genomics is failing on diversity
project everybody terms and conditions
Participation is Voluntary
Participation in Project Everybody is fully voluntary. Your choice to refuse to participate comes at no direct personal disadvantage to you.
Purpose of the Research
Project Everybody seeks to create an anonymous database of human DNA that better represents populations currently underrepresented in the human genome.
Description of the Procedures
A tube will be sent to you in the mail for you to fill with saliva. When the tube is filled, you will mail the tube back to Project Everybody. DNA will be extracted from the provided sample, prepared for sequencing, and sequenced. Your information will go into a database in which your name will not in any way be linked to your genomic information.
Risks
In the event of data breach, your anonymous DNA sequence could be stolen and misused. We hope to take extreme cautionary measures to prevent any data breach.
Confidentiality (including privacy and identifiability)
Your genomic information cannot be traced back to you. We will keep all information on a private server and anonymously aggregate your genome with other genomes to generate databases of reference genomes.
Potential Benefits
The generation of reference genomes will greatly influence health outcomes for individuals of African, Indigenous American, Asian, Middle Eastern, and Indigenous Oceanic groups.
Financial Reimbursement, Costs and Commercialization
To achieve genome equity, we need to target historically disenfranchised populations. Therefore, Project Everybody must sequence DNA free of charge. However, the databases that must be created must also be funded. This is where we call on our generous friends and supporters to help us financially to build this database. Without your funding, Project Everybody will cease to be able to function. Please consider giving.
In order to generate better understand and generate solutions for underrepresented populations, academic institutions and biotech industries will need to have access to certain portions of the aggregate databases. At no time will an individual DNA sequence be provided to any third party company.
Withdrawal from Research
Upon sample submission, each participant will be provided a randomized DNA barcode in order to preserve anonymity. If at any time, you would like your DNA removed from the database, click here to begin the process of withdrawal.
Contact information
Contact Project Everybody at proj.everybody@gmail.com
Project Everybody does not assume responsibility for any damage or loss incurred in the process of database generation.