Harvard Personal Genome Project: lessons from participatory public research

Area of Science:

• Genomics
• Bioinformatics
• Participant Engagement

Background:

• The Harvard Personal Genome Project (PGP) initiated in 2005.
• Enrolled thousands of volunteers sharing genome, health, and trait data.
• Utilizes an 'open consent' framework due to data identifiability, excluding privacy promises and requiring participant comprehension.

Purpose of the Study:

• To evaluate a model of non-anonymous, public genomes.
• To assess researcher-participant communication and interaction.
• To report experiences with returning research-grade whole genome data.

Main Methods:

• Quantitative assessment of participant communications and donated datasets.
• Observation of community growth and discussion.
• Utilizing web-based tools and participant education.

Main Results:

• Public, non-anonymous genome data is valuable for research.
• A highly participatory research model emerged.
• Participants are highly committed, self-pursuing and donating research-relevant datasets.
• Active engagement observed between researchers, participants, and staff.

Conclusions:

• The open, non-anonymous genome model fosters valuable research and participant involvement.
• Web-based tools, participant education, and community growth are key facilitators.
• This participatory model benefits both researchers and participants.
• Encourages consideration of this model by other research initiatives.