QS Access: Data Donation Part 2

February 25, 2015

In our Access Channel we’re trying to expose ideas, efforts, and insights about personal data access and it’s role in both generating personal and public insights. The last time we wrote about data donation we mentioned a few different projects that allowed you to collect and/or publish your self-tracking data for others to view and access. Today we’re going to showcase a few research-focused projects that collect personal data, but also allow participants to access the data they contribute. This seemingly minor addition, participant access to data, is actually a process not commonly employed by research studies. We’re very interested in new participatory models of research that respect participant’s rights to fully understand and access the data they contribute. If you know of others please get in touch and we’ll add them to the list.

Personal Genome Project: Harvard
Probably the most well-known of these research projects is the ongoing Personal Genomes Project based at Harvard University (PGP). Led by George Church and an outstanding team, the PGP is an ongoing research project recruiting participants to “share their genetic, health, and trait data in a public and non-anonymous manner. Participation is free.

American Gut
Much like the project above, the American Gut project is an open call for participant to collect and share their data. In this case it is human microbiome data. Although enrollment is not free (they request donations starting at $99 to participate) data is returned to participants. (If you’re interested in participating in microbiome research, but live in Europe see the British Gut project)

Dynamics of the Human Microbiota
This new project, based out of Stanford, is also exploring the human microbiome. This study includes a variety of different perturbations and longitudinal data collection. Participants are compensated for their participation, their data is made accessible to them, and they have the opportunity to discuss their results with the study staff.

For those of you interested in research methods and ethics we recommend reading this brief article by Jeantine E. Lunshof, George M. Church, and Barbara Prainsack: Raw Personal Data: Providing Access

Related Posts

Self-Tracking For COVID-19

Gary Wolf

May 27, 2020

Explore how you can get advance warning of sickness onset using simple analysis of your self-tracking data by joining Quantified Flu.

Interview: Mad Ball of Open Humans

Gary Wolf

March 2, 2020

Mad Ball was a rising scientist at Harvard who switched to build a nonprofit foundation creating tools for the future of self research: "I wanted to do things that would not have happened otherwise had I not been present to question those boundaries. What we’re doing, nobody else is doing."

The Unreasonable Effectiveness of the QS Show&Tell

Gary Wolf

January 7, 2020

The Quantified Self community organized itself around one key activity: sharing first person reports about our own discoveries using our own data. Why does it work so well?