What are the risks of access to genetic information?
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For now, only the wealthy have access.
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Spencer Wells:
Spencer Wells is a leading population geneticist and director of the Genographic Project from National Geographic and IBM. His fascination with the past has led the scientist, author, and documentary filmmaker to the farthest reaches of the globe in search of human populations who hold the history of humankind in their DNA. By studying humankind's family tree he hopes to close the gaps in our knowledge of human migration.
Wells's own journey of discovery began as a child whose zeal for history and biology led him to the University of Texas, where he enrolled at age 16, majored in biology, and graduated Phi Beta Kappa three years later. He then pursued his Ph.D. at Harvard University under the tutelage of distinguished evolutionary geneticist Richard Lewontin.
His landmark research findings led to advances in the understanding of the male Y chromosome and its ability to trace ancestral human migration. Wells then returned to academia where, at Oxford University, he served as director of the Population Genetics Research Group of the Wellcome Trust Centre for Human Genetics at Oxford.
Following a stint as head of research for a Massachusetts-based biotechnology company, Wells made the decision in 2001 to focus on communicating scientific discovery through books and documentary films. From that was born The Journey of Man: A Genetic Odyssey, an award-winning book and documentary that aired on PBS in the U.S. and National Geographic Channel internationally. Written and presented by Wells, the film chronicled his globe-circling, DNA-gathering expeditions in 2001-02 and laid the groundwork for the Genographic Project.
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TRANSCRIPT:
Question: What are the risks of access to genetic information?
Spencer Wells: We are entering a realm or an era like it or not of personal knowledge of your own genome in the next 5 to 10 years, I suspect, I very strongly suspect. As a matter of course educated people in western countries, i.e. people who have access to these resources and its relatively expensive right now but it will get cheaper and cheaper over time. People in these places will have access to their own genetic code, they’ll understand their risks of various diseases, they’ll know more about their ancestry, all these other things. But it’s really the disease stuff that I think gets people a little bit concerned that’s because ancestry is, you know, it’s one part of who you are, it’s what you’ve inherited, these genetic markers that don’t necessarily affect any phenotypic trait the way you appear in a disease state, whatever it is. They simply connect you with your ancestors and so, you know, I think that’s a story that in a way people can kind of accept. But the medically relevant genetic traits that are being tested for now by some of the companies and more and more that’s gonna move into the clinic and you’re gonna get it done when you go to visit your doctor very early on in life very likely. That tells you about your future, that’s not just about where you came from, that’s about where you might be going and I think that’s what scares people a little bit about this. Now what people should understand and we as geneticists I think, you know, we have to take it upon ourselves to educate people about why this is important and why it’s worth doing. These are not genetic variants that for the most part are a death sentence okay. Yes there are genetic variants that have, you know, 100% penetrance if have them you are definitely gonna come down with a particularly nasty disease, whatever, those are relatively rare. For the common diseases, the ones that affect most people that most people will be afflicted by in their lifetimes, cancer, diabetes, hypertension, stroke, etc. For those disorders the genetic variants are a little bit iffier, i.e. you’re carrying a variant but it doesn’t mean that you have a 100% chance of coming down with the disease, it just increases your risk and in fact you can modulate that risk, you can reduce it by changing your lifestyle. So if you’ve got a lot of genetic variants that predispose to obesity, if you’re really careful about what you eat and you exercise a lot, you can probably avoid that that’s the power of the genetic knowledge, it’s not the idea that it’s gonna tell you what your future definitely will be. .....
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