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“Are you still collecting stories about DTC testing? I've got one for you!” my grad student L.W. e-mailed a few days ago. Little did I know her family's experience would change my mind about direct-to-consumer genetic testing.
It doesn't take a brain scientist to see that the visual cortex of this formerly-blind woman lights up -- after gene therapy.
It isn’t often that a brain scan chokes me up, but this one did. The fMRI shows area 17 of the visual cortex coming to life in a woman born with Leber congenital amaurosis type 2 (LCA2). She’s part of the very same gene therapy clinical trial chronicled in my upcoming book The Forever Fix: Gene Therapy and the Boy Who Saved It. The symbolic boy is Corey Haas, who, four days after gene therapy in 2008 at age 8, screamed when he saw the sun at the Philadelphia zoo, his shadow world suddenly brightened. Read More
"Research shows genes influence criminal behavior," proclaims a January 25 news release, setting my genetic determinism detector on high alert.
I flashed back to the cover of the May 18, 1970 Newsweek, “Congenital Criminals?” which probed the work of Patricia Jacobs. Here’s what my human genetics textbook says on the study provoking the 1970 headline: Read More
iBooks Author “will let anyone make their own interactive textbook, in like 5 minutes flat,” according to several reports on Apple’s January 19 announcement. Then why did my first college textbook, Life, take 10 years?
It’s simple: researching, writing, editing, and publishing Read More
I could see how self-published textbooks might be fun for readers in the way that Wikepedia is, but God forbid they end up in a classroom. As a fiction writer, I'm so thankful to my agent, editor and copyeditor for their diligent work to make my book the best it can be. I can't imagine publishing a textbook or any NF without a team of reviewers.
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Jeanne Ryan
Jan 22, 2012 11:49 AM EST
very insightful! technology is a wonderful tool, but there are some things that it cannot replace.
Strawberries can use a gene from peanuts to withstand frost because the genetic code is universal.
Humans do not have their own genetic code, and certainly each of us does not have his or her own. The idea of our utter uniqueness might be attractive, but genetics just doesn’t work that way. And it’s a good thing.
The genetic code is the correspondence between a unit of DNA Read More
Thank you for explaining the difference. It is always a good feeling to learn something new--and possibly useful. No, I'll never be directly involved with genes (other than my own because I'm not that kind of doctor), but I might have misused the terms in a novel some day. It is a pleasure to read an informative blog by someone who is passionate about what she does.
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Dixiane Hallaj
Jan 16, 2012 4:02 AM EST
Thank you Dixiane (I love your name!). I often feel like this blog is a black hole that no one sees, but it is great fun, allowing me to blab on about things that can't be said in a textbook. Thanks again! What kind of doc are you? What are your novels about?
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Ricki Lewis
Feb 09, 2012 8:12 AM EST
Yes, but what about folks who are allergic to peanuts...? Should they forgo strawberries too?
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rashmi
Feb 09, 2012 8:26 AM EST
Good question. A gene is a gene. So yes, if a peanut gene responsible for the allergy finds itself in a strawberry, then people who are allergic should avoid the altered strawberries - that is why labels may be important.
We are all people of color, except the Invisible Man and Woman.
I struggle to stay politically correct when updating my human genetics textbook. “Hemophiliac” became “person with hemophilia” and “victim” vanished several editions ago. In the current incarnation, “mentally retarded” became “intellectually disabled” after colleagues warned that Read More
“Breakthroughs” in biomedicine are rarely that – they typically rest on a decade or more of experiments. Consider gene therapy.
I just unearthed an article from the December 1990 issue of Biology Digest, "Gene Therapy." I wrote it a mere two months after the very first gene therapy experiment, the much-publicized case of 4-year-old Ashi DeSilva, Read More
The 10000h rule isn't so simple, I interviewed Ericsson last year who explained - http://euroscientist.com/2011/03/pivot-points-is-10000-hours-practice-enough/ I do get your point though...
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Anonymous
Jan 04, 2012 9:06 AM EST
Thank you! Your piece is terrific. Yet I remain a genetic determinist. For some skills, such as guitar playing and writing, I think dedicated practice can make a difference, but some degree of innate skill must be there. In the case of gene therapy, time and trials were necessary for the problems to emerge, sadly sometimes tragically.
I don’t usually take too kindly to the evil geneticist stereotype in fiction, but I can’t resist a good dystopian novel. "When She Woke," by Hillary Jordan, is the perfect book Read More
I found your site while doing some online research of gene therapy for a young-adult novel I'm writing. After seeing the recent Planet of the Apes movie, I had to wonder just how much the science matters. But even if I don't go into a lot of detail in my book, I'd like to get it right. Just ordered THE FOREVER FIX and wish it were already out. In the meantime, I'll be checking out your blog!
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Jeanne Ryan
Jan 20, 2012 7:38 PM EST
Hi, Jeanne. I loved the recent Planet of the Apes movie, and blogged about it awhile ago. I'd be happy to look over your book. What a great topic for young adults! I wish I had a copy of Forever Fix to send you right now but all I have is one coffee-stained galley. I think you'll find the views of the family members helpful, especially the sibling dynamics when one child gets all the attention. I can't wait to read your book too!
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Ricki Lewis
Jan 22, 2012 11:37 AM EST
How gracious of you to offer to look over my book. Thank you! This one's still in the draft stages, but I'd love input when the time comes.
One question I'm trying to answer now if you don't mind is whether it's still plausible for new gene therapies to be delivered via a virus vector instead of the newer (safer?) artificial chromosomes. I want to use a virus vector in my book because I think it has the ability to create scarier unintended consquences, but only if it makes sense in light of current science.
In this age of expiring drug patents and stalled pipelines, I was pleasantly surprised to find in my morning batch of news releases four reports of promising, eclectic ways to fight diverse diseases. The Read More
I still marvel at the interface between a tissue and an organ, even after a quarter century of writing college biology textbooks.
I can easily envision a sheet of epithelium folding itself up into the tiny tube of a capillary. But how do only four basic tissue types connect and contort to fashion such Read More