5 Picks for 5 July 2011

5 Picks, Journal Highlights | 05. Jul, 2011 by | 2 Comments

July-5-300x196On the 5th, 15th and/or 25th of each month, we’ll post 5 “picks” selected by researchers, physicians, policymakers, other professionals, patients, advocates and caregivers. These picks represent articles, books, websites, films, etc. that they have chosen as particularly interesting, compelling or descriptive of science — either in general or in an area in which they have an active interest.

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Dinner Debate at Genetic Alliance Conference

The picks for July 5, 2011 come from speakers at the 25th Anniversary Annual Genetic Alliance Conference: “25 Years of Innovation” held June 23-26, 2011. Genetic Alliance “improves health through authentic engagement of communities and individuals.” Their annual conference brings together a diverse spectrum of researchers, ethicists, funders, service providers, advocates, policy-makers, patients, parents and industry groups. These picks were mentioned by speakers during their conference presentations, during discussion sessions that followed, or during a dinner debate titled, ”The Personal Genome: Hope or Hype?” The quotations are from other written sources that describe the material they cited at the conference or otherwise state the point of view they conveyed about/from the “pick.”

“Gloomy predictions about the future of pharma have forced the industry to investigate alternative models of drug discovery. Public-private partnerships (PPPs) have the potential to revitalize the discovery and development of first-in-class therapeutics. The new PPP Arch2POCM hopes to foster biomedical innovation through precompetitive validation of pioneer therapeutic targets for human diseases. This recent article describes our new approach.”

Article Title: Leveraging Crowdsourcing to Facilitate the Discovery of New Medicines
Journal & Issue: Science Translational Medicine, June 22, 2011
Authors: Thea C. Norman, Chas Bountra, Aled M. Edwards, Keith R. Yamamoto and Stephen H. Friend
(This article is available open-access through a special arrangement with Science.)
(Dr. Friend”s slides from the Genetic Alliance conference can be viewed here.)

Stephen Friend, MD, PhD
President, Co-Founder and Director
Sage Bionetworks

 

“Music is a conversation, just like science is a conversation (well, an argument). Music seemed like an interesting way to come at the problem from a field that is semantically a world away from science, but in design space is remarkably similar. To me, two recent musical events bear on open collaborative science. The first one we can draw a lesson from is the World Choir. It”s a collaborative choir of more than 2000 people and got tons of press about how it was a collaboration breakthrough, and was designed as an asynchronous request for videos, with a ton of post-processing to stitch them into a single video. Then there”s the World Opera, which is all about actually performing an opera live with the performers in multiple cities around the world. A lot of what we mean by open science is the choir: we”ll do crowdsourced data collection, we”ll see a surge of data from impassioned observers into online groups like Sage Bionetworks, but that data will have to be painstakingly synced and organized before we get casino online real money a beautiful model. Real collaborative science is going to be hard, like the opera, because it”ll be hard to get on the one. Big questions, both technical and epistemic, have to get answered. Collaborative opera is totally disruptive to regular opera. It will be resisted; its flaws will be evident with no post-processing to make it shiny. These problems, this inherent resistance (in the electrical sense, not the political or incentive sense), is the sort of thing we have to get used to in open science. We can run a bunch of virtual choirs – that”s what 23andme is doing, and I”m a customer. But our infrastructure, and our design thinking, and most of all our expectation, has to support opera, because it is, like science, hard.” (From John Wilbanks” blog, Common Knowledge.)

Website/video: Eric Whitacre”s Virtual Choir, performing “Sleep”
John-WilbanksURL: http://ericwhitacre.com/the-virtual-choir/stats
(Mr. Wilbanks” slides from his Genetic Alliance presentation are available here.)

John Wilbanks
Vice President for Science
Creative Commons

 

“Some people are ready to jump off the cliff and learn all they can about their own genomes with no medical professionals to guide them. We should let them do that. They’re adults. Some of us need a little more help easing into the personal genomics era, and that’s OK too. Some people have little interest in learning about their genomes. While I don’t quite understand that attitude, because I am both a romantic and a geek—this stuff is really fun, you guys! Have you seen what you can do with your raw data on Promethease?—I can’t force people to find biology as fascinating as I do. All I can do is try to explain to them why I love it.” (From Part Five of the series)

Article Series Title: “DNA Dilemma: The Complete Series”
Source: Newsweek, August 2010
Segments and Corresponding URLs: Day One: Should I Take a Genetic Test, Day Two: What Can I Learn From An At-Home Genetics Test?, Day Three: How Reliable Are At-Home Genetics Tests?,  FAQs, Day Four: Should Genetics Tests Be On the Market? Day Five: Time to DecideRecommended Reading

Mary Carmichael
Knight Science Journalism Fellow
Massachusetts Institute of Technology

 

“We foresee a day when many individuals will want to get their own genome sequenced so that they may use this information to understand such things as their individual risk profiles for disease, their physical and biological characteristics, and their personal ancestries. The mission of the Personal Genome Project is to encourage the development of personal genomics technology and practices that:

  • are effective, informative, and responsible
  • dan-vorhaus2yield identifiable and improvable benefits at manageable levels of risk
  • are broadly available for the good of the general public.” (From the PGP website)

Project Title: Personal Genome Project
URL: http://www.personalgenomes.org/

Dan Vorhaus, J.D.
Attorney, Robinson, Bradshaw & Hinson
Editor, Genomics Law Report

“The larger point I am trying to make is that, if done right, consumer genomics–just like academic genomics–can be an opportunity to begin to address genetic exceptionalism and our shoddy history in understanding and assimilating genetic information. This is exactly why I wish that direct-to-consumer companies could 1) get their act together and agree on a transparent set of standards and 2) share spit kits and genetics education materials with, say, low-income people and community colleges rather than focusing more of their attention on concierge docs, executive health participants and other well-heeled folks.” (From Dr. Angrist”s blog, Genome Boy)

Title: Geneticist Nathaniel Pearson talks with Sharon & Ozzy Osbourne about Ozzy”s genome (“A rocked-out genetics consult”)
Source: TED MED Talk 2010
URL: http://www.tedmed.com/videos-info?name=Ozzy_and_Sharon_Osbourne_with_Nathaniel_Pearson_at_TEDMED_2010&q=published&year=2010&loader=51

Misha-Angrist1Misha Angrist
Assistant Professor
Institute for Genomic Sciences & Policy
Duke University

 

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Dr. Collins played at the banquet and was then joined by his college roommate; together they provided the “After Hours” entertainment

July 5, 2011