Personal Genome Project

(1) Consent for eligibility screening: You will be asked to read, review, and electronically sign the 'mini-consent' document and create an online account.

(2) Eligibility questionnaire: Short questionnaires will collect information about your family circumstances, privacy preferences, and residency.

(3) Entrance exam: An online exam will assess your comprehension of concepts relevant to providing informed consent to participate in the PGP. This exam will include concepts such as potential risks of participating, project protocols, and basic genetics.

(4) Review of PGP consent form: You will be asked to carefully read and review the full consent form.

(5) Complete and submit eligibility screening: You will be given the opportunity to submit your eligibility screening results or delete your account. You will be notified whether you are invited to continue the enrollment process, waitlisted, or rejected.

(1) Consent to participate: You will be asked to read, review, and electronically sign the full consent.

(2) Collection of baseline trait data: Trait data will be collected via online questionnaires and a personal health record (PHR). Information gathered may include allergies, immunizations, personal medical history, medications, physical traits and measurements, diet, ethnicity/ancestry, lifestyle, and environmental exposures. Once enrolled, you will be asked to periodically update and add to this information.

(3) Pledge: You will be asked to make a financial pledge and specify the amount you intend to contribute if you are enrolled in the project. Participants will be enrolled without regard to whether a financial pledge is made or the amount of the pledge, but contributions are encouraged and will be used to subsidize the costs of research and related activities.

(4) Identity verification: You will be asked to provide your mailing address. You may be asked to respond to additional identity verification procedures, such as a short online questionnaire about your identity based on information available in public data records.

(5) Application for enrollment: You will be given an opportunity to submit your application for enrollment. You will be notified that you are either selected to continue, waitlisted, or rejected. Individuals selected to continue to the next stage of the enrollment process, will receive an enrollment kit by mail, including saliva collection materials.

(1) Enrollment or visit medical center: To complete enrollment, a visit to a medical center may be requested by the PGP. At the medical center, participants will be interviewed by one or more PGP staff who may verify identity and consent, confirm familiarity with the study protocols, and/or review and confirm trait questionnaire responses. Tissue specimens may also be collected at the medical center (blood sample, saliva sample, and/or skin cells from arm or leg).

(2) DNA analysis: The tissue specimens collected will be prepared for DNA sequencing and other biological analyses.

(3) Return and public release of research data: Participants can opt-in to have their participant profile made available on a publicly accessible website, or withdraw from the study.

(4) Establishment, distribution and analysis of cell lines: Tissue samples submitted to the PGP may be used for a range of research purposes, including creation and distribution of cell lines. Cell lines provide a renewable supply of your cells and DNA

(1) Safety monitoring: The PGP has a Data Safety Monitoring Board (DSMB) that monitors the impacts of the PGP on enrolled participants. Every three months, participants are required to respond to an email from the DSMB that asks whether any adverse events have occured as a result of participation in this research study.

(2) Profile updates: Participants may receive invitations to voluntarily submit additional trait data and tissue samples as the study progresses.