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This is quite a week for sensational headlines on da blog: Last post was about scientists reading minds; now, they’re making the blind see.
To the right is Barbara Campbell, a New Yorker who lost her vision slowly over the course of her youth. Now 56, she’s been completely blind for 26 years. Until, that is, she got her artificial retina. Now she can see her stove top turn hot and computer monitor glow. From the New York Times:
Read the rest of this entry »
Partly cool, partly terrifying…from Wired:
Scientists are one step closer to knowing what you’ve seen by reading your mind.
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Having modeled how images are represented in the brain, the researchers translated recorded patterns of neural activity into pictures of what test subjects had seen.
Though practical applications are decades away, the research could someday lead to dream-readers and thought-controlled computers.
“It’s what you would actually use if you were going to build a functional brain-reading device,” said Jack Gallant, a University of California, Berkeley neuroscientist…
Remember when sequencing the whole human genome was a big deal? Now so many have been done that it’s hard to keep them straight. Luckily, Eye on DNA has published a handy list!
Her readers added some additional notes in the comments, which I’ve noted in brackets here:
- Craig Venter
- James Watson
- Stephen Quake
- George Church
- Marjolein Kriek
- Hermann Hauser
- Han Chinese
- Seong-Jin Kim
- Korean AK1
- Yoruban African NA18507 [been sequenced twice, each with a different technology]
- 14 others sequenced by Complete Genomics
- Unknown number [at least 10] sequenced by Knome
- 6 genomes sequenced at high depth by the 1000 Genomes Project
- 180 genomes sequenced at low coverage by the 1000 Genomes Project
- Two acute myeloid leukemia patients
But medicine, too, was giving him little satisfaction.
Wigler lives by a handful of axioms: an apple falls when you drop it; every human is equally “weird;” and nearly every human opinion is flat-out wrong.
But doctors make life-or-death decisions based on other people’s research, which is often ambivalent or inconclusive.
“There’s a small set of things that I have good evidence to believe are true, and I base everything on them. You can’t do that and be a doctor,” he says. “I just couldn’t live like that.”
Last week, in preparation for the Cold Spring Harbor Personal Genomes meeting, I made a few polls, and sent them off to blogs far and wide. A big thanks to all who put them up.
Before getting to the results, I want to make an obvious disclaimer that many people mentioned in comments and emails to me. I am not a scientist, a statistician, or professional pollster. I tailored the questions to get at what I was most interested in, and sent them to an eclectic list of blogs, listserves, forums, etc., as I saw fit. This is not a scientifically rigorous survey, and thus any stab at interpreting the results will be incomplete, at best. Nevertheless, the data is quite provocative.
Another note: Several autism blogs that I approached chose not to participate (one, in particular, with much gusto) — which is unfortunate, as I would have been very interested to see what their readers thought. I suppose their refusal is telling in itself.
OK, so finally to the numbers…
Tomorrow, at the Cold Spring Harbor Personal Genomes Meeting, I will for the first time attempt to “live Tweet” a scientific meeting. CSH’s new media policy is that potential Tweeters must obtain permission from the participants in advance, so, obviously I will comply and only send info from those speakers who have said it’s ok.
So start following ‘virginiahughes’ tomorrow if you want to see my updates. I’ll use the hashtag #CSHL and follow Daniel MacArthur‘s reporting style. And, for those of you who just don’t “get” Twitter, I’ll try to get a Twitter widget so you can see updates from my blog (if I can figure out how to do it…)
After Austin (above) and his brother were diagnosed with autism, their mother Beth Malow, an expert in sleep disorders, began studying the link between autism and sleep.
When they were young, Matthew Belmonte and his older brother, John, were fascinated by the same obscure sights: the rise and fall of shadows under streetlights when walking down the street, or individual specks of dust revealed in a beam of sunlight. They both enjoyed rocking back and forth to the high-pitched hum emanating from an old television. But in at least one respect, the boys were markedly different: Matthew had a huge vocabulary, and John didn’t speak.
“Even though he wasn’t speaking, I had the sense that I saw what he saw, and he saw what I saw,” Belmonte recalls. “I always knew that he and I thought in the same way.”
John had been diagnosed with autism in 1964, a few years before Matthew was born. In 1998, their sister’s daughter was also diagnosed with autism.
Inspired partly by his family’s struggles, Matthew, an assistant professor at Cornell University, studies perceptual experiences and cognition in people with autism.
Among autism researchers, he is one of many with close family ties to the disorder.
Early next week, I’ll be part of an ethics panel at a Cold Spring Harbor Laboratory conference on the future of personal genomics. Because I’ve written a lot about autism and schizophrenia, the organizers have asked me to talk about what I think is the current and future appetite for genetic testing of psychiatric diseases.
I have a general idea about this “appetite”, but I really want some numbers to solidify my thinking. I wrote a (very short!) survey on the topic, and am asking bloggers affiliated with advocacy organizations, or those interested in personal genomics generally, to direct their readers to my questions.
Of course, I want my readers to take the survey, too! And pass it on to friends. The more responses, the better. (Oh, and if you’re an autism advocate, take this modified survey instead.)
I will share the survey results with you after next week, after the conference. Hopefully I’ll get a few hundred responses and we’ll be able to catch some meaningful trends.
It’s Saturday, and I’m on vacation. So what better time for a post of pictures?
The first shout-out is both beautiful and sad. The Feral Houses feature by Sweet Juniper shows what happens when a city is abandoned. Detroit apparently has about 10,000 abandoned structures at any given time, including:
The second is another common site in the Midwest: Walmart crazies. From PeopleofWalmart:
A report published last week in Pediatrics was the first to ask parents about their genetic testing preferences in a statistically rigorous way. Tallying 1,342 responses, the survey found that when asked about untreatable diseases, about one-third of parents are definitely or probably interested in testing, one-third are definitely not or probably not interested, and one-third are unsure. Those numbers stayed consistent regardless of the severity of the disease in question.
The findings are quite surprising given current ethical standards. Most doctors and genetic counselors only endorse testing for diseases that have proven treatments, or treatments that have shown promise in clinical trials. For instance, babies are routinely tested for phenylketonuria, a deadly metabolic disease that can be prevented by a specific diet.
Autism has no clinically proven treatments, but several therapies may improve symptoms in some kids. For that reason, I would argue that forgoing testing might actually harm the child in the long run.
If a genetic test identifies a known autism risk factor in a 1-year-old, for instance, that might spur the parents to look for warning signs of the disorder, and perhaps begin early intervention programs.
It looks like at least one-third of parents would agree with me. With the current rise of home DNA tests, it may not be long before eager parents bypass the genetic counselors — and the ethical status quo — and take matters into their own hands.
