Video Round-up: Esther Dyson on Charlie Rose, Spencer Wells on Colbert, and important video I can’t show you on genetic discrimination

Esther Dyson was interviewed on the Charlie Rose Show this past week. Charlie Rose ends the show by saying to Esther, “I can’t wait to see your genome”. I think this is the first time I’ve ever witnessed this expression being used like this — said with such endearment too! — but I’m sure it won’t be the last. (A google search for this phrase shows zero results at the time this post was written.)

The first twenty minutes of the show are mostly about Esther’s involvement in the Personal Genome Project (PGP) [disclosure: I work for the PGP]. The discussion doesn’t stop at genomes or health; the rest of the show ventures into the future of commercial space travel, the internet, cookie monsters, personalized search, AI and more. Esther never ceases to inform and inspire me, and challenge the way I think. I’m so glad she is among the folks that will be pioneering personal genomics for the rest of us via the PGP. Check it out:

This video isn’t pirated, Charlie Rose actually put it on the web intentionally and he allows me to put it on my blog, so that I can share it with you. This type of video distribution allows the content to live a life of its own and gain contexts that would not be possible if were sequestered, in a Charlie Rose archive for example. During the interview, Charlie Rose mentions that he raises money for his show all by himself, no federal money, no PBS money, etc. Charlie Rose is operating a successful free knowledge enterprise. Remarkable. I wonder what level of advertising or viewer support would make it entirely self-sustaining?

I really hope we’re in the very early stages of what will become hockey stick-like growth in the number of educational/intellectual content producers that adopt business models that allow free access and sharing of good content. Running into the old model can be so frustrating. It inevitably raises my blood pressure a notch, if only for a split second, until I decide to forget about the inaccessible video. “I’ll just check back in 6 months or a year”, I usually tell myself, assuming that everything will eventually make it to the web. Right?

This happened to me recently when I tried to find a Fred Friendly Seminar on genetics and privacy that aired a few years back. Even though the video is “old” by internet standards, the video contains lots of insight that is relevant today and I wanted to put it on my blog for the edification of my readers — especially since the Genetic Information Nondiscrimination Act (GINA) is stalled in the Senate due to a legislative hold by Oklahoma Senator Tom Coburn. I figured this video might inspire people to get informed, get interested and get involved.

Lively, informed debate is the hallmark feature of any Fred Friendly Seminar, its what makes them great. In the video, a lively panel, including both Louise Slaughter and Justice Breyer, debate and discuss genetic discrimination (see image below).

fredfriendly_geneticsprivacy.gif
(a few clips are here)

To my chagrin, I discovered that except for a few very brief highlights this Fred Friendly Seminar was not available on the web, although I could purchase a DVD for $120. Um, no thanks.

Just when I was about to give up hope I discovered that the video was being offered through a service called FMG Online. The excitement quickly fizzled when I visited the website. To get into the site, you must identify yourself as either “IT Administrator”, “Educator”, or “Media Librarian”. As a blogger, I’m really all three of those things at the same time, but not enough of any one by their standards to be a real customer. (It then occurred to me that some bloggers might be characterized as “a new breed of librarian”, mental flag for future essay)

I found the licensing fees for the Fred Friendly video to be quite reasonable actually. For $33, I could lease the rights for a single stream of the film for one year. The film is one hour, so in theory I could potentially enable 8760 people (24*365) to watch this film assuming I could schedule everyone back-to-back and everyone really watched all 55 min. If I were able to do this (which is extremely unlikely I realize), that $33 in licensing fees would amount to about $0.003 per viewer. Hey that ain’t so bad! I might even pay this out of my own pocket, apply some Adsense revenue to the cause, or get a corporate sponsor for this video (or a video series). I sent an inquiry to the company 60 days ago and haven’t heard anything back yet, ugh.

It saddens me a little when I see such good educational content of social importance languishing behind some firewall. Especially when the content was made with the specific intention of having an impact on the world and being relevant. Then, during a period when it is most relevant, its inaccessible. Too bad.

If Fred Friendly were alive today, would he be putting all of his videos on YouTube like Charlie Rose? I suspect so. In the 60s, Fred Friendly founded public access television in New York City. Isn’t YouTube just public access TV re-incarnated?

The controversy over the use of genetic testing by employers is largely a theoretical concern at the present time, although there are a few real cases to examine. One of the concrete cases involves a railroad company’s use of genetic tests on a few employees, another recent case involved, or almost involved, the basketball player Eddy Curry.

The Burlington Northern railroad company’s use of genetic testing for carpal tunnel on a few employees is examined in this video segment from 2001:

facesgeneticdiscrimination_burlingtonnorthern.gif

" onclick="javascript:urchinTracker('/outbound/www.pbs.org/perl/media.cgir?t=rp_038_f=virage/newshour/pbsnh060701_220k.rm_038_s=2096096_038_e=2781781_br_/');">Real Audio Stream or Windows Media Stream or search page

Another viral video on genomics, which is already well-traveled around the web, is the interview of Spencer Wells on the Colbert Report talking about the Genographic Project, here you go:

Navigenics, a much anticipated (small circles) personal genetic testing company, just unveiled their website. On the main page is a very slick video featuring comments by company leadership:

navigenics.gif

Navigenics site (hat tip: David Hamilton)

Another “YouTube for Test-Tubes” is live. Sci-Vee is backed by PLOS, NSF, and SDSC. Also see JoVE, the Journal of Visualized Experiments.

scivee-logo.gif

For some historical perspective, check out this video made by Charles and Ray Eames for the 1958 Brussels World’s Fair. Its called “The Information Machine”:

More posts with videos

Comments

7 Responses to “Video Round-up: Esther Dyson on Charlie Rose, Spencer Wells on Colbert, and important video I can’t show you on genetic discrimination”

  1. Steven Murphy MD on August 20th, 2007 3:08 pm

    Google your genes again……
    Well, whaddy think? I have little concern regarding the acquisition of genomes by google…..for now…..There is no HIPAA guarantees with Google!
    -Steve
    http://www.thegenesherpa.blogspot.com

  2. Trackbacks on September 2nd, 2014 4:12 pm

Leave a Reply




You may use HTML tags in your comment. Please be patient, comments may take a while to post.

Subscribe without commenting