world-changing people, projects and ideas
Register for PopTech 2010. | Sign up for our newsletter. | We're hiring!
George Church and the Human Genome Project
George Church, founder of the Personal Genome Project and Professor of Genetics and Harvard Medical School begins by thanking the crowd and mentioning how insprinig he’s found the past three days. So how can we harnass this energy and change it into action?
CC image by Kris Krug.
For furthering genetic research, he believes, the answer may be in crowdsourcing. “Data doesn’t do much good if you don’t share it.”
A challenge is that we’re at a point where we don’t know what the social standards for data sharing are going to be. For example. says Church, “Our faces are something that actually might be worth hiding” because they could unwittingly betray racial characteristics, emotions, or other things we might not want to share. “Openess has changed since we were young.” We used to not talk at all about topics like salary, illness, sexuality. But that’s changing. As an example, he mentioned the site Patients Like Me, which brings together people who have been diagnosed with life-altering illnesses to share symptoms, treatment, etc. In this case, what’s shared is balanced with how beneficial it is for the greater good of the community.
What about the risk of using this type of data for discrimination? The GINA act was passed in 2008: the Genetic information Nondiscrimination Act. This will prevent employers etc. from discriminating against someone because of their genetics. “Because,” Church says, “everyone is watching.”
You can now get your 10 year-old kid a DNA kit so they can do things like “determine who their fathers are,” joked Church. But that is actually happening: Church told a story about a boy who was the child of anonymous sperm donor. He got a kit, tested his saliva, located his father and showed up unannounced on his doorstep.
Not all DNA data are used for CSI-like idenitification. The data can be used to identify more than just genes and traits. It’s not, as Church states, “This is your genetics, get used to it” but a potential tool to inform lifestyle changes.
Who can contribute to new cures and prevention? Anyone can by motivating others to do it, donating time and money and raising consciousness even though folks aren’t geneticists.
So why open source data? “We do this because we’re not sure who is going to make the break-though,” says Church, “It’s the outsiders who often make the breakthroughs.” Volunteers participating in shaping the Human Genome Project and extensive education is done with the volunteers before they get involved. They have approval to scale to 100,000 diverse volunteers. Right now the biggest complaint is “Where’s my genome?” — people want this information!
Church revealed to the crowd that he himself is actually “a mutant”. His genetic code reveals that he has three heart problems, atypical infarction, arrythmia, narcolepsym dyslexia, skin cancer, and long femur syndrome (he’s tall). What do you do with this information? It used to be that would get generic health advice: excercise, drink milk, eat green beans, grains and iron unless…you have specific conditions that some of these solutions would exacerbate. Having specific data would better inform choices for potential treatment.
Data could also be used to create a “bioweather map”. Instead of having a cold front coming in, what if it was actually a mapped the spread of a virus? Working on this through the human genome project.
What inspires us to participate? Being a part of a community: motivate, contribute time, raise awareness. “It’s like a walk-a-thon,” says Church, “Some will be walking, some will be cheerleading in various ways.”
- Meh.
- Love it!
Related Videos
Comments
More information about the human genome project you can find in:
http://www.geneticsofpregnancy.com/Encyclopedia/The_human_genome_project.aspx
This site contains information On Pregnancy Diseases And Genetic Testing.
Add your comment
No HTML or JavaScript, please.
VIDEO
BLOG