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Sharon Terry has lived through a couple of decades during which patients went from being complete outsiders to participants. She worries now that they risk being co-opted by the medical research juggernaut.

Her story started in Boston in the mid-1990s, when she discovered that her two young children had been born with a rare genetic disease called pseudoxanthoma elasticum. It’s a progressive disorder that causes connective tissue to gradually get hard, and can impair, skin, eyes and blood vessels.

“Researchers came and took blood from us and our kids,” Terry says.

A few days later, another set of researchers wanted to take blood, too.

… Read More

Image:┬áBy Geneticalliance2013 – CameraPreviously published: None, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=24634637

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