Privacy policies around the world shudder: openness philosophy emerges

At the vanguard of patient openness is PatientsLikeMe. In their privacy policy they link to their “Openness Philosophy“, which reads:

“Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.”

It goes on:
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Best Sentence I Read Today on “Onlineness”

“Controlling your life online isn’t about a set of guidelines for everyone to follow. It’s about being aware of where you might be giving up control and making conscious decisions.”

This is taken from an excellent meditation by Vanessa Fox on living life online (she tagged the post “onlineness” which I had to look at a couple times to find the root word).

One topic she touched on briefly is how a person’s online activity can reach beyond the individual and touch the lives of others. What is acceptable practice in these circumstances? People disagree. Here is a clip:

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Nom de Ome: A pseudonym for your genome

How common will genomic pseudonyms be in 25 years? When might a person choose to use a Nom de Ome?

In some sense, the Human Genome Project’s human genome reference sequence has a nom de ome (which is “human genome reference sequence”). This sequence was generated mostly from a tissue sample donated by an anonymous male from Buffalo, NY. This volunteer was likely solicited from a newspaper article that ran in the Buffalo News on March 23, 1997. Here are the opening words from that article:

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Say hello to GenomeBoy

Misha Angrist, one of the first ten participants in the Personal Genome Project (the so-called PGP-10), has started a blog “GenomeBoy.com“. Great blog name. He explains the provenance:

When I told a friend that I was going to be one of the first ten subjects in George Church’s Personal Genome Project (PGP), she said, “Why you? What makes you so special, Genome Boy?” I thought that was funny. And so here it is. In the spirit of good sportsmanship, I will answer to”Genome Boy,” but don’t expect me to don the tights, mask and cape…at least until they’re ready.

With that comment, I feel nearly 100% confident that I will see a picture of Misha in tights before I die, I’m almost sure of it! I’m also sure that the blog content will be smart and funny. The title of his very first post references Spinal Tap, the hilarious mockumentary . (For the uninitiated: “Hello, Cleveland!” video segment from the film on YouTube)

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:

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The gene is dead…oh wait…alive but sloppy

The concept of the gene almost died this morning. I was just sitting at my desk minding my own business, reading a journal article when, blam!, the gene was dead. Well almost — turned out to be more of a near death experience. I’m sorry to report there was no white light or anything mysterious like that. But there was coffee, so thats good.

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Can a personal genome sequence get a creative commons license?

The short answer is no. There is a long essay waiting to be written here. But for now, I can say that the reason it will not work is because there is no clear legal foundation to build a license on top of when it comes to sequence data. Creative Commons licenses have copyright to build on. Material Transfer Agreements (MTAs) have good old fashioned property law to build on (turns out important things still exist outside of the bitsphere). A personal genome sequence is, well, just bits. (Update: Or lifebits? I love the term)

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Polony A Go-Go

Since when are undergraduates accomplished in bioinformatics, hacking hardware, wetlab work, and bioethics, and music? These folks do exist. This summer, I have had the pleasure of working with the multi-talented James Kugler, an intern in the Church Lab.

I was just alerted to the fact that he is something of a budding musician trying to break out in the nascent scene of “genome pop“. His debut track will surely capture the hearts of ligase molecules across the globe. And no ballad on polony sequencing would be complete without fluorophores, and this one has got them in spades.

Listen to Polony A Go-Go, by James Kugler.

UPDATE (12:35AM): James does not sound like a 4-inch tall, helium-huffing chipmunk IRL. This is a WP and Flash player bug. Oh boy, I hope James doesn’t find out about this. I have just totally made a mockery of his big debut. Everyone please try to keep this on the DL until further notice. James, if you’re reading, I’ve sent in the calvary. We’re going to get your voice back back to normal soon, real soon…

UPDATE 2 (12:36AM): Oh yeah, it just occurred to me that if you go directly to the song URL, rather than rely on the embedded flash player (that is, do not click on the little blue icon next to song link), you can listen to the song at the normal sampling rate in your browser and avoid the chipmunk effect. So copy/past the URL below and have a listen:

http://thepersonalgenome.com/wp-content/uploads/2007/08/polony_a_go_go.mp3

Lyrics below the jump.

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Slelling, Genetic Avatars, and Mail Order Chewing Gum Impregnated with your DNA

In David Zindell’s space opera Neverness, the term “slel” is introduced to describe the misappropriation of someone else’s DNA. In a review of Zindell’s book, Orson Scott Card gives us the following definition:

Slel: To take DNA from someone against his will, to create avatars of him, or perhaps children.

Last week Hsien documented the recent efforts of UK police to make slelling a standard practice.

I’ve got two riffs on slelling for you: (1) genetic avatars and (2) DNA bubble gum.

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False Alarm: The Celebrity Meme

There is this meme that has been going around about how “celebrity genomics” is in some way very naughty and should be avoided. This meme keeps popping up since it was first inaugurated in a news article by Erika Check entitled “Celebrity genomes alarm researchers”. Here were some of the quotes from that article:

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