
Beatrice Rienhoff is very sick. A flaw hidden deep within her genes has baffled the best doctors in the world. So her father is combing through her DNA, one nucleotide at a time to find a cure.
Discover Magazine has a fascinating article about something I have never heard about before-- with technological advances in both computers and medical technology, many individuals (some who are NOT scientists or professional researchers btw) are doing important primary research on genetic illnesses, and making important contributions to science.
Some instances, the extreme rareness of the illness (e.g. Beatrice Rienhoff's) makes it impossible for "mainstream" science to spend any resources on research. I can't find the Discover magazine article, but Wired did a story about it as well. Taking advantage of social networking, many of these private researchers pass long leads and suggestions to each other. Cambridge Massachusetts seems to the center of the DIY movement, with even its own lab for do-it-yourself-ers.
Meredith L. Patterson of San Francisco, who is a computer programmer by day, has set up a make-shift bio lab in her dining room. She’s trying to create a genetically modified yogurt bacteria that will glow green to signal melamine contamination. She constructed a gel electrophoresis chamber for $25 and purchased some green fluorescent jellyfish protein from a bio supply company for less than $100. Step-by-step instructions for genetic transformation experiments were only a Google search away. With the relative simplicity and low-cost of basic DNA experiments, it may not be long before kids start asking for electrophoresis kits instead of microscopes.

Anthony of the Open PCR movement, dedicated to promoting at home PCR testing.
One of the movement's pioneers is Robert Sabin, who after watching an employee die a horrible death from stomach cancer, decided to become a DYIer. "You don't need a Ph.D. to be a scientist, you need passion. When a scientist gets an idea in his head, he won't stop until it's tested. Scientists are possessed by their ideas and what they want to do. I am like that." Sabin's obession was phytic acid in the whole grain of wheat, which was typically removed during processing. Sabin believed nature wasted nothing and assumed the removal of phytic acid could cause mischief. Fast forward several years, and Sabin published a studying showing giving phytic acid to lab animals reduced tumor growth significantly. His work also showed phytic acid could reduce key markers for heart disease. That study was published in Journal of Applied Nutrition. Sabin has recently published a major study on phytic acid in January's issue of Journal of of Alzheimer's Disease; the study was done in conjunction with the University of Oregon, the Veterans Hospital, and the National Institutes of Health. Despite his success, Sabin is very cautious: "I see myself as a medical pioneer, but I recommend that anyone who wants to do this think long and hard about it. You'll be mostly working alone."

DYI founder Mackenzie Cowell, left.
What are the implications to society at large? That depends on who you ask. Mackenzie Cowell (co-founder of DYIBio) predicts that some biohackers are likely to make breakthroughs in everything from vaccines to super-efficient fuels. Others will simply fool around, he says: for example, using squid genes to make tattoos glow in the dark. All of which he believes will ultimately benefit humanity. “We should try to make science more sexy and more fun and more like a game,” he says.
But several bio-corporations and at least one biotechnological watchdog group is very leery. Jim Thomas says that synthetic organisms could ultimately escape and cause outbreaks of incurable diseases or unpredictable environmental damage. “Once you move to people working in their garage or other informal locations, there's no safety processes in place,” he says, adding that terrorists could be inspired by amateur genetic tinkering to launch a devastating bio-attack on America.” But the DIY community scoffs, saying “A terrorist doesn't need to go to the DIYbio community,” she says. “They can just enroll in their local college.”

iGEM jamboree at M.I.T.
The iGEM (International Genetically Engineered Machine Competition Jamboree at M.I.T.), the audience awaits the awarding of the grand-prize trophy, a huge aluminum Lego that is kept by the winning team for one year, like the Stanley Cup. A New York Time's article on the DYI genetic revolution with technological implications (e.g. a car powered by electric eels? Say what ;)
Extra post musical goodness: Paul Simon and Ladysmith Black Mambazo sing the The Boy in the Bubble. "These are the days of miracle and wonder; this is a long distance call, the way the camera follows us in slow motion, the way we look to a distant constellation that's dying in a corner of the sky. These are the days of miracle and wonder, and don't cry, baby. Don't cry."
While I share some concerns, I think overall this movement is so exciting, with the benefits outweighing the risks.
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Date: 22/9/11 20:03 (UTC)(no subject)
Date: 22/9/11 20:57 (UTC)But funny you mentioned the flying rat with the bubonic plague. Some critics of this basement research have used the recreation of the 1918 influenza virus with publishing the entire genome as an example of a potentially bad outcome. (http://blog.chron.com/sciguy/2005/10/should-we-be-publishing-influenza-genomes/) I think that's way over the top, but you know, I can see a company trying to tighten up regulations to prevent DIY work by using these scare tactics.
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Date: 22/9/11 21:45 (UTC)http://cosmiclog.msnbc.msn.com/_news/2011/09/18/7802623-gamers-solve-molecular-puzzle-that-baffled-scientists?GT1=43001
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Date: 23/9/11 04:20 (UTC)