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Madeleine Price Ball: Free the Data


Recommended by: George Church, Harvard University

Madeleine Price Ball is a perfect fit for George Church's Personal Genome Project. Passionate about data sharing and making data freely available, she has edited many a Wikipedia entry, including the "Genetics" page and has even created a few articles of her own, such as the "Stop codon" entry.

"For the scientific method to succeed, it's important to have data that is shared publicly," she says. "I'm troubled by the phenomenon of data being locked up."

Ball pursued her PhD in epigenetics at Harvard University. During that time she worked with Church, and following the completion of her degree, she stayed on to do a postdoc in his lab working with the Personal Genome Project, a project in which volunteers have their whole genomes sequenced and the results shared openly.

Her role as director of biology involves interacting with the participants, she says, which is unusual for traditional research projects. She's worked on the informed consent process, a critical piece of the project since not only are the participants themselves gaining access to their genomic data, but so are other researchers and the general public.

"In some ways, it's an ethical project," she says.

Somewhat surprisingly, one of the main challenges has been convincing other researchers of the project's scientific mettle. Because the participants are all "healthy," Ball says that some researchers have said that it's "not real science," since the project is not focused on a specific disease.

Paper of note

However, Ball hopes a recent paper published in the Proceedings of the National Academy of Sciences, will help dispel this notion.

The paper, the first publication of the Personal Genome Project, examines the genomes of "people that look perfectly healthy," she says, and has found that many of their genomes contain variants that are predicted to cause serious disease, despite the participants not actually having the disease.

"They're clarifying that the literature is messy," Ball says. "It's maybe not exciting to other researchers because it's a negative result, but it's important for the scientific method."

Looking ahead

In the next five years, Ball predicts that the costs of whole-genome sequencing will continue to decline, eventually becoming cheap enough so that everyone can have their genomes sequenced.

Additionally, Ball says that genomic research will continue the trend of becoming more participatory, and, as such, communication between participants and researchers will become increasingly important.

One thing Ball says she's learned from the PGP is that individuals don't always realize how slow science can be. "People expect to get something back," she says. "But, I think it's healthy for the society; it's great to have more communication between researchers and the people they're studying."

And the Nobel goes to…

True to form, if Ball were to win the prize, she'd want to win it for "facilitating the spread of research knowledge" — enabling people to do research, researchers to share knowledge, and other people to access that knowledge.

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