This section offers a guide to the types of primary resources that are likely to prove useful as background for the Architectures for Life workshop. This compilation is meant to be exemplary rather than encyclopedic.
- Related workshops and conferences
- Policy reports
- Commentaries and perspectives
- In the media
- Organizations associated with program participants
RELATED WORKshOPS AND CONFERENCES
Spring events with some overlapping themes
GET Conference. On World DNA Day, April 25, 2012 at Harvard Medical School. Conference Website.
The GET Conference is the event for people working at the frontiers of human biology. We invite leading thinkers to discuss the important ways in which new genomic technologies will affect all of our lives in the coming years and to debate their technical, commercial, and societal impacts. We bring together scientists, industry leaders, entrepreneurs, practitioners, investors, researchers, and others to discuss advances in our ability to measure and understand human biology.
Sage Bionetworks Commons Congress. “Building Better Models of Diseases Together.” April 20-21, 2012 in San Francisco, CA. Conference Website.
The 3rd Commons Congress will feature short keynote presentations by leaders in patient advocacy, network systems and collective discovery. Platform sessions will detail initiatives to open previously closed clinical trial data and bring patients into the research mix. Details on the program details, attendees, sponsors, and links for a free live webcast of the Congress are available on the conference website.
Policy documents and reports related to themes covered at the workshop
COMMENTARIES AND PERSPECTIVES
Recent commentaries on themes covered at the workshop. Click on the title for a link to the full text.
- R. Benjamin. A Lab of Their Own: Genomic Sovereignty as Postcolonial Science Policy. Policy & Society 28(4): 341-355 (2009).
- Brownstein, C. A., Brownstein, J. S., Williams, D. S., Wicks, P. & Heywood, J. A. The power of social networking in medicine. Nature Biotechnology 27, 888–890 (2009).
- G.M. Church. Opinion: Evolving Engineering. The Scientist, October 1, 2011.
- Friend, S. & Ideker, T. Biomedical technology and the clinic of the future. Nature Biotechnology 29, 215–215 (2011).
- Greene, J. A. & Kesselheim, A. S. Pharmaceutical Marketing and the New Social Media. New England Journal of Medicine 363, 2087–2089 (2012).
- S. Hilgartner. Intellectual Property and the Politics of Emerging Technology: Inventors, Citizens, and Powers to Shape the Future. Chicago-Kent Law Review, 84(1), 197-224 (2009).
- F. Moss, Our High-Tech Health-Care Future. New York Times, November 9, 2011.
- Lunshof, J. E., Chadwick, R., Vorhaus, D. B. & Church, G. M. From genetic privacy to open consent. Nature Reviews Genetics 9, 406–411 (2008).
- S. Jasanoff. A Living Constitution. Science 331.6019, February 2011.
- S. Jasanoff (Ed.). Reframing Rights: Bio-Constitutionalism in the Genetic Age. Cambridge: MIT Press (2011).
- Lowrance, W. W. & Collins, F. S. Ethics: Identifiability in Genomic Research. Science 317, 600–602 (2007).
- S. Parthasarathy. Assessing the Social Impact of Direct-to-Consumer Genetic Testing: Understanding Sociotechnical Architectures. Genetics in Medicine 12(9), 544–547 (2010).
- Prainsack, B., Reardon, J., Hindmarsh, R., Gottweis, H., Naue, U., & Lunshof, J. E. Personal Genomes:Misdirected Precaution. Nature, 456, 34–35 (2008).
- Saha, K. & Hurlbut, J. B. Research Ethics: Treat donors as partners in biobank research. Nature 478, 312–313 (2011).
- Terry, S. F., Terry, P. F., Rauen, K. A., Uitto, J. & Bercovitch, L. G. Advocacy groups as research organizations: the PXE International example. Nature Reviews Genetics 8, 157–164 (2007).
- P.J. Williams. Freshmen Specimen, The Nation. September 9, 2010.
- J. Wilsdon, B. Wynne, & J. Stilgoe. The Public Value of Science. Or How to Ensure that Science Really Matters. London: Demos (2005).
- Winickoff, D. E. & Winickoff, R. N. The Charitable Trust as a Model for Genomic Biobanks. New England Journal of Medicine 349, 1180–1184 (2003).
- A. Wojcicki. A Secret Code in All of Us. Huffington Post, January 5, 2012.
IN THE MEDIA
Recent media coverage about themes covered at the workshop. Click on the title for a link to the full text.
- E. Dolgin. Massive biobank yields first results—with more to come. Nature Medicine 17, 1326–1326 (2011).
- D.E. Duncan. Growing Heart Cells Just for You. Technology Review, September/October 2011.
- FDA Weighs Pros, Cons of Home Genetic Testing. Bloomberg Businessweek, March 8, 2011.
- A. Harmon. Where’d You Go With My DNA?. New York Times, April 24, 2010.
- R.L. Hotz. The Really Smart Phone. Wall Street Journal, April 22, 2011.
- V. Hughes. When patients march in. Nature Biotechnology 28, 1145–1148 (2010).
- F. Manjoo. A Dashboard for Your Body. New York Times, August 3, 2011.
- M.P. Mills. With the Tricorder X PRIZE Qualcomm Launches the New Era of Metadata Medicine. Forbes, January 18, 2012.
- J. Palca. Genome Maps May Spot Disease In African-Americans. National Public Radio. July 21, 2011.
- A. Pollack. Justices Send Back Gene Case. New York Times, March 26, 2012.
- K. Saha & J.B. Hurlbut, Opinion: Occupy Science?. The Scientist, January 24, 2012.
- C. Sansom. The power of many. Nature Biotechnology 29, 201–203 (2011).
- A. Standen. Veterans To Create World’s Largest Medical Database, National Public Radio. November 14, 2011.
- P. Wayner. Monitoring Your Health With Mobile Devices. New York Times, February 22, 2012.
- R. Winslow. When Patients Band Together: Using Social Networks To Spur Research for Rare Diseases. Wall Street Journal, August 30, 2011.
- N. Wade. A Decade Later, Genetic Map Yields Few New Cures. New York Times, June 12, 2010.
SELECTED ORGANIZATIONS ASSOCIATED WITH ProGRAM ParticipantS
Participant’s name is in parentheses.
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