Madeleine Ball: An Inspiration In Open Medicine And Free Software

Madeleine Ball is an inspiration to anyone who thinks individuals should control the software and medical information that define our lives. I’m happy to honor her for this year’s Ada Lovelace Day, when we share the stories of women in science, technology, engineering, and math that inspire us.

Madeleine is a post-doctoral researcher at Harvard University, working in George Church’s lab. As a Ph.D. student, she studied whole genomes to look for trait-causing genetic variants, and she continues this work as Director of Biology in the groundbreaking Personal Genome Project. All the while, she shares software under free software licenses and participates actively in Wikipedia...

The Personal Genome Project (PGP), a focus of her current work, is an effort that helps researchers work with individuals who are willing to share their genome sequence to improve our understanding of genetics as a whole. While services like 23andme help people find out information about their genome, donating the genome to PGP enables all scientists to make use of the information. The data and code behind PGP is available under permissive, free software-compatible terms. This coming weekend, Madeleine is representing the Personal Genome Project at the upcoming Open Science Summit. To me, PGP’s emphasis on personal and community empowerment over health care through technology is reminiscent of Karen Sandler’s concern about proprietary heart implants...