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.I’ve had the chance to get to know her through friends that are part of the Boston FSF/OLPC free software scene. I also had the chance, in a car ride back from a political event, to hear her defend and explain Wikipedia to a scientist not very familiar with it. While I personally have only ever made small edits and contributed photos, she’s a scientist with years of experience editing the encyclopedia, creating new pages, making new diagrams as SVGs in Inkscape, reverting vandalism, and participating in community discussions around deletion. It was a pleasure to hear her perspective.
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.
As a programmer, Madeleine has contributed changes to GET-Evidence, a new, free software collaborative research web app. In her personal work, Madeleine has revived an unmaintained Python module for parsing genealogical data and co-created an interactive tool for browsing tree structures, for example the phylogenetic tree of life. Her free software background shines through in the most recent post on her blog, where she expresses concern about 23andme’s first patent. In 2008, Madeleine came up with the algorithm that selects articles for OLPC’s small Wikipedia snapshot, provided with every XO laptop.Open this link and play the video to get a sense of how important that work is. If you’re impatient, jump to minute 4, where you see the Wikipedia activity in use in a classroom.
Madeleine’s work is an inspiration, and a reminder of how to apply free software principles in a new domain while staying true to software freedom. I had the chance to share the 2011 US Independence Day with her and a few others, so I’ll conclude with this photo from that event.