Here is a roundup of recent interesting news articles on genomics, data sharing, drug development and public engagement. The common theme of course is the value of public access and progressive collaboration. Sage Bionetworks is mentioned and quoted in many of the pieces. There are a number of excellent reporters and writers covering this topic who offer sharp insights into the problems, challenges and opportunities in sharing research data, tools and results.
Sage will continue to provide alerts on news and opinions related to its genomics research, open commons and public engagement activities on its twitter feed (@sagebio) and its facebook page. We welcome your comments and suggestions on other articles and posts that should be highlighted.
Topic: Frustration at the lack of genomics cures:
10 years after the announcement of the completion of the race to sequence the human genome there are very few innovative therapies to show for the massive public and private investments in genomic science. Two major contributing factors to the disappointments were proponents raising excessive expectations and our simplistic views of complex biological regulatory networks.
“A Decade Later, Genetic Map Yields Few New Cures” Nicholas Wade in the New York Times; http://nyti.ms/d7ZdPi
“Gene Map but few drug treasures” Andrew Pollack in New York Times; http://nyti.ms/anlb8M
“For Pioneer, Long Road Of Highs And Lows” Andrew Pollack in New York Times: http://nyti.ms/dknbnO
“Desparately Seeking Cures” Mary Carmichael and Sharon Begley in Newsweek point to open source biomedicine; http://bit.ly/aa2OFZ
“Is Secrecy Hurting Research?” Mathew Herper in Forbes calls Sage Bionetworks one answer: http://bit.ly/aTNAdt
Topic: Models of Data Sharing and Public Engagement:
There continue to be a number of great examples of large scale academic and commercial collaboration and sharing which hold great promise not only for the discovery of novel therapeutics but also as models for progressive, patient-empowered data sharing.
Amy Marcus in Wall Street Journal; Boston gene study researchers share results with patients; http://bit.ly/9T7RMA
Robert Guth in the Wall Street Journal; “Glaxo Tries a Linux Approach; Drug Maker Shares Its Research Data Online in Test of Open-Source Principles”: http://bit.ly/95V07c
Sabin Russel in New York Times: Kaiser begins genetic analysis of 130,000 members , plan to do >500,000; http://nyti.ms/a3sQV1
Topic: Data Sharing is hard for everyone
NASA scientists have ignited a controversy by their partial release of data from the Kepler program. There are reportedly widespread concerns that they are retaining the best data to give themselves time to analyze, publish and mark territory. Is this a proper use of taxpayer funds? Does this sound familiar?
Alexis Madrigal in Wired; NASA withholding ‘The Good Stuff’; http://bit.ly/9rPKhC
Dennis Overbye in New York Times http://nyti.ms/c9zbVf; “Who Owns the Data?”
Follow-up Coverage of the Sage Commons Congress in San Francisco:
The Sage Commons Congress in April brought together over 200 global thought leaders on integrative genomics, computational disease models and data sharing. It was an exciting event that helped articulate the challenges and drafted strategies to overcome the barriers to rapid and open sharing of biological data.
“Patients Teach Scientists to Share” Matthew Herper in Forbes on Josh Sommer’s show-stopping talk at the Sage Commons Congress; http://bit.ly/9gshlQ
“Open Biology’s Quest to Explode Data” John Wilbanks perspective on Sage Commons Congress in New Scientist; http://bit.ly/90aSyV