Two-time Emmy award-winning documentary producer Marilyn Ness has been following around the Personal Genome Project (PGP) staff and volunteers for the past several years. I’m thrilled to announce that she has released the opening sequence and webisode #1 featuring George Church, founder and participant. More webisodes will be released in the coming weeks!
Webisode #1 featuring George Church:
You can read more about the documentary project by visiting Marilyn’s website:
Short bio for Marilyn Ness:
Marilyn Ness is a two-time Emmy Award-winning documentary producer with 14 years of experience. She founded Necessary Films in 2005, directing short films for non-profits including the ACLU and developing documentaries for television including Bad Blood and GENOME: The Future Is Now. Prior to that, Ness spent four years as a producer for director Ric Burns, collaborating on four award-winning PBS films: Ansel Adams; The Center of the World; Andy Warhol; and Eugene O’Neil. Ness’s other credits include films for The Learning Channel, Court TV, and National Geographic, as well as films for the PBS series American Experience and the theatrical feature The Life and Times of Hank Greenberg.
Charlie Rose interviews PGP participants George Church and Steven Pinker, as well as founders of 23andMe Linda Avey and Anne Wojcicki. Here is the video:
Harvard Medical School’s Office of Public Affairs has published an audio recording of the October 20th press conference where the PGP-10 discussed their individual decisions about public release of their genomic data.
George Church, founder of the Personal Genome Project, will be a guest on Science Friday with Ira Flatow, tomorrow at 2pm ET.
Details on how to tune in to this October 24th broadcast.
Update: Listen to the archived show now.
The Harvard Medical Labcast published a podcast today about the Personal Genome Project (PGP). Interviews include founder and professor of genetics at HMS, George Church; Jeantine Lunshof, ethicist for the PGP; John Halamka, PGP participant and HMS CIO; and myself.
Misha Angrist takes stock of a number of issues related to personal genomics in an article published today. Do people want access to their genomic data? Should people have access? What should they expect to discover from a genome sequence? What has been his experience thus far?
Misha also draws attention to one under appreciated aspect of obtaining a personal DNA sequence: there’s more to genomics than personalized medicine. Genomics might also be interesting and worthwhile even without obvious direct benefits.
“If you’re interested in medicine, you should talk to your doctor,” [George Church] says. “But if you’re interested in seeing a revolution close up and participating in research, then you should [be free to] mess around.”
Sober-faced enthusiasts may be the bootstraps necessary for the field of personal genomics to achieve lift-off. According to Misha:
“This is where we are in the era of personal genomics: some modest amusement, a few interesting tidbits, a bit of useful information, but mostly the promise of much better things to come. The more people are allowed–encouraged, even–to experiment, the sooner that promise can be realized.”
Read the article.
Misha Angrist. Personal Genomics: Access Denied? Even if we can’t interpret the data, consumers have a right to their genomes. MIT Tech Review. September/October 2008
See, Misha’s blog GenomeBoy.com
See, PGP-10 profiles
This month’s issue of Wired Magazine has a nice article about George Church and his Personal Genome Project. Check it out:
Thomas Goetz, “The Gene Collector” Wired Magazine, August 2008.
Laboratory science is filled with dull, repetitive tasks. Casting gels, pipetting, streaking plates, and on and on. Did you know adult C. elegan worms have 969 cells? Well they do. We know that because a number of graduate students
were locked locked themselves into a room and painstakingly counted, and re-counted all those cells.
It should come as no surprise that laboratories have been compared to penal colonies. Glorified work camps for the technically adept! The root word of laboratory is “labor” after all.
Does the practice of science really need to be this way? Could science and laboratory work be more playful? In Shapiro’s 1991 book, The Human Blueprint, George Church wonders whether the lab could be turned into something more akin to a video game arcade:
“In counter to Sydney Brenner’s comparison of a sequencing laboratory to a penal colony, George Church has offered an analogy to a video game arcade, a place where a basically repetitive operation is so enjoyable that the participants work voluntarily for hours on end and even pay for the privilege. ”
Comparisons of science careers to video games are much more fun than comparisons to labor camps or penal colonies. The quote from George above challenges us to think beyond metaphors. How might the laboratory environment itself be transformed into something more playful, fun, and engaging?
Robert Shapiro, The Human Blueprint. St. Martin’s Press, 1991. [quote from page 252]
In the spaces between the scientist’s bench and the patient’s bedside, practitioners of translational medicine concern themselves with the conversion of basic research into real world medical applications.
The field of translational research is evolving from its trickle down, bench-to-bedside roots into something which approaches an ongoing dialog between scientists and clinicians. From the NIH translational research site:
Scientists are increasingly aware that this bench-to-bedside approach to translational research is really a two-way street. Basic scientists provide clinicians with new tools for use in patients [sic] and for assessment of their impact, and clinical researchers make novel observations about the nature and progression of disease that often stimulate basic investigations.
The silent partner in translational research has always been the patient, who is presumably in bed, supine.
The Virtuous Circle
The field of personal genomics is on course to evolve the model of translational research one step further. Trickle down, bench-to-bedside genomics; two-way streets between researchers and clinicians…to finally, the virtuous circle, where individuals, at their desktops, are equal partners in what is bound to be an exhilarating group exploration of science, medicine, and our shared humanity:
An recent editorial in the journal Nature Genetics signifies this mindshift is indeed underway:
Giving individuals their own genotype is not so much premature as truly disruptive. The individual gains a personal stake in the ongoing research effort and a huge incentive to find out more. A personal stake in finding out something that was not previously known is the key to getting students into research and may well be a powerful tool to educate and interest members of the public in the details of their own health and functioning. This boon was anticipated two years ago by George Church…at the launch of the ‘collaborative research endeavor’ called the Personal Genome Projects (http://www.personalgenomes.org/)…
…It is right to be skeptical of unknowns, but it would be wrong to underestimate the motivational potential inherent in handing people their genomes and asking them to participate in finding out more about their variation and phenotypes…
…In the meantime, individual genomics will have informed thousands participating in one of the most exciting areas of biomedical research, and it may recruit participants in prospective
studies that they will have funded partially from their own pockets. That being said, they are co-investigators, not patients, and the experiment will be conducted on their own terms!
Hurrah! I’m breathless.
Editorial. Positively Disruptive. Nature Genetics. 40(2): 119. February 2008.
Note to readers: The cast of characters in the graphic design above (aren’t they great?), were kindly provided by Ricardo Vidal. I can’t tell you how convenient it is to have a file folder containing a physician, a scientist, and red-headed woman in a blue dress. Thanks Ricardo! BTW, Ricardo is supplementing his grad school tuition with graphic design work for hire!