General Interest
Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- Me too! RT @blaine_5: I’m honored, thank you! RT @AccessDNA: Blogs we love: http://bit.ly/bXa218 @dgmacarthur @nsgc_org @alliejanson
- Why the State of Personal Genomics is Not as Dire as You Think: http://bit.ly/dtqTes
- RT @dgmacarthur: Wolfram Alpha has put together a new gene search tool: http://bit.ly/bqzyJt Very limited; colour me underwhelmed.
- Collins, Lander Botstein to share Albany Medical Center Prize: http://bit.ly/dlIhrT
- RT @dgmacarthur: Genetic Future post: Celebrity genomics without the Y chromosome: Glenn Close has her genome sequenced http://bit.ly/bF3DrJ
- RT @dgmacarthur: Genetic Future post: Disease hunting with whole genome sequences: the good news, and the bad news: http://bit.ly/b7k7Bw
- Update from @lindaavey on forthcoming (?) New York Times article and personal genomics: http://bit.ly/cdtxMG
- re: NEJM & Science WGS papers released today, @ivanoransky has a nice column on the shifting embargo deadlines http://bit.ly/99QjcY
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Why the State of Personal Genomics is Not as Dire as You Think
Another Tale of the Struggle of Personal Genomics, Full of Sound and Fury, Signifying…What? After a while, the personal genomics news cycle can begin to feel predictable. Recently, and not for the first time, there have been rumblings that personal genomics pioneer 23andMe is struggling. The most recent “news” appears to be a December SEC filing disclosing a $4 million payment to an unidentified 23andMe executive. Gene Expression and BNET have taken the opportunity to recycle some of the company’s previous financial struggles, including co-founder Linda Avey’s departure and a well-publicized round of fall layoffs, and to speculate broadly about the state of morale at the company in addition to the well-being of the personal genomics industry more generally.
Avey herself, perhaps unintentionally, has fueled speculation that something may be afoot with a pair of recent posts (the original post has now been combined with an update) on her own blog. Avey has launched a preemptive strike against what appears to be an upcoming New York Times piece that will “question[] the viability” of the personal genomics industry and “hits too close to home” for Avey not to comment. (Or, as GenomeWeb headlines it, Linda Avey Versus the New York Times.)
Perhaps all of the smoke signifies a smoldering fire at 23andMe. Then again, it may represent nothing more than periodic reverberations from the social media echo chamber, where common memes are repackaged and recycled at regular intervals.
Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Last week, thanks to a particularly impressive confluence of client demands, no stories found their way into either full-length postings or Twitter updates. However, after a brief hiatus, the Weekly Twitter Roundup is back. This week we have a plethora of Tweets from @genomicslawyer that highlight developments that caught my eye as I was wading through an RSS backlog of over 3,000 items. Enjoy.
- AUS company offers discounted genetic tests if you’ll share the information with your insurers. http://bit.ly/cRmkq3 Impt GINA implications.
- Another national biobank in Scandinavia? Norway contemplating commercialization of national biomarker resources: http://bit.ly/cNaDZR (2/18)
- Going global, @PathwayGenomics partners with Colombian lab to offer DTC genetic testing: http://bit.ly/cziLCQ? (GenomeWeb, 2/18)
- London Sperm Bank brand designed by Silk Pearce http://bit.ly/agYAU6 (HT @MishaAngrist) As donor anonymity declines, will PR fill the void?
- Explaining genetics to consumers @PathwayGenomics licenses Harvard-developed content for DTC genetic test reports: http://bit.ly/cnw4WP
- Pin the Egg on the Sperm: Couple turns to social media, friends to help defray the cost of IVF/PGD: http://bit.ly/d4hcNB (SFGate, 2/5)
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The Texas Newborn Blood Spot Saga Continues
Contributed by Allison Williams Dobson of the Center for Genomics and Society at the University of North Carolina at Chapel Hill.
The Texas Department of State Health Services (DSHS) could soon face a new federal lawsuit in light of the discovery that it sent 800 anonymous newborn blood samples to a U.S. military DNA lab in 2003 and 2007. As discussed in a post by Adam Doerr on February 2, Texas Civil Rights Project lawyer Jim Harrington successfully negotiated a settlement in 2009 to have DSHS destroy 5.3 million newborn blood samples because it did not obtain informed consent from parents to use the samples for research. Now DSHS has come under criticism over samples it had already released for approved research.
The Texas Tribune reported last Monday under the headline “DNA Deception” that its review of nine years’ worth of e-mails and internal documents, obtained under state sunshine laws,1 revealed a DSHS agreement to help the military build a national mitochondrial DNA (mtDNA) database. The Armed Forces DNA Identification Laboratory claims a legitimate research purpose for the newborn DNA samples—to improve the identification of missing person remains through analyses of highly stable mtDNA.2 Because mtDNA generally lasts longer in a wider variety of tissues than nuclear DNA, it is also more likely to be recovered from particularly old or decayed remains.
Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- RT @fredcobio: LavaAmp in @WIRED The First and Last Meeting of Everyone with a Fully Sequenced Genome http://is.gd/8EsGw #GET2010
- Remote participation will be happening. Stay tuned. RE: @blaine_5 Announcing the GET Conference 2010 #GET2010 – http://tinyurl.com/yefu7yy
- Personal Genomics in the News: Desmond Tutu and the GET Conference: http://bit.ly/aFTuXA #GET2010
- Have a problem employee? Bench to Market has some advice for you: http://bit.ly/aqUqn8
- “Quintiles’ new era–‘Having skin in the game’ for drug development” http://bit.ly/bppQyN CROs coming closer to pure pharma.
- GLR Update: Australia Tackles Disclosure of Genetic Information without Consent: http://bit.ly/aCrsoh
- Is deCODEme part of @decodegenetics’ future? Says new CEO Collier: “If you want one, you’d better buy it now” http://bit.ly/cdcdqp
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Personal Genomics in the News: Desmond Tutu and the GET Conference
It’s been a busy twenty-four hours in the world of personal genomics. Yesterday, as announced in the journal Nature, the number of individuals who have had their genomes sequenced and made publicly available increased by two. Archbishop Desmond Tutu and !Gubi, a tribal elder from a Bushman (or Khoisan) community in Namibia, joined the ranks of personal genomics pioneers that include scientific and cultural luminaries such as James Watson, George Church, Skip Gates, Jr. and Stephen Quake.
Hot on the heels of the Nature paper (which has been exceptionally well-covered elsewhere, including by Not Exactly Rocket Science, the Technology Review, and the New York Times) comes this morning’s announcement that many of those same genomics pioneers, including Watson, Church, Gates, Quake and others, will be sharing the stage together at the inaugural GET (Genomes Environments Traits) Conference. From the conference announcement:
“The GET Conference 2010 marks the last opportunity in history to gather a majority of individuals in the world with public personal genome sequences in a single venue,” says George Church, founder and principal investigator of the Personal Genome Project and professor of genetics at Harvard Medical School. “With rapid advances in technology, the number of individuals with personal genome sequences is expected to rise dramatically, from dozens today to thousands by 2011 and a million or more individuals within the next few years.”
The morning portion of GET Conference 2010 will feature wide-ranging discussions during which personal genome pioneers and globally recognized leaders of genomic science and industry, including Misha Angrist, George Church, Jay Flatley, Henry Louis Gates, Jr., Rosalynn Gill, Seong-Jin Kim, Greg Lucier, James Lupski, Stephen Quake, Dan Stoicescu and James Watson, will share their experiences and discuss the future of personal genomics. Award-winning science journalists Carl Zimmer and Robert Krulwich will moderate the discussions.
GLR Update: Australia Tackles Disclosure of Genetic Information without Consent
Last fall, the Genomics Law Report reviewed new medical confidentiality guidance from the U.K. General Medical Council (GMC) and wondered whether the “public interest” was a sufficient justification for the disclosure of patients’ genetic information without their consent.
Since that time, Australia’s National Health and Medical Research Council (NHMRC) has tackled the same issue, publishing new privacy guidelines for health practitioners on the disclosure of genetic information (pdf).
In each case, the basic thrust of the guidance for medical practitioners is the same – there are certain circumstances where a patient’s genetic information may be disclosed against his or her wishes. However, the guidance from the GMC and the NHMRC does differ in several important respects.
First, while the GMC’s guidance applies to all doctors in the United Kingdom, the NHMRC’s guidance is restricted to Australian doctors in private practice. The NHMRC’s guidance also restricts its applicability to the disclosure of genetic information to living genetic relatives for medical purposes. Disclosures relating to unborn children (e.g., information related to embryos or carrier status), to legal but non-genetic relatives (e.g., adopted children or spouses) or for genetic research are all outside of the scope of the NHMRC’s guidelines. The GMC’s guidelines, on the other hand, contain no such specific limitations, referring only to the practitioner’s responsibility to balance the patient’s interests against those of others, and to disclose genetic or other information when justified in the public interest.
Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- RT @jensmccabe: pharma + academia: cross-pollination between Lilly and Harvard? Interesting – http://tinyurl.com/yaecory
- RT @crossborderbio: @matthewherper ’s call for SPA transparency: http://bit.ly/as7O7K My take: http://bit.ly/aCqJ0T
- Improving complex disease risk production w/ phenotypic & genotypic info from close relatives: http://bit.ly/dvb0Od (Genome Medicine)
- Last tweet: “I want to build a $10 sequencer that can sequence the genome, and do it for maybe $10. That’s what we need. That’s biology.”
- RT @bioitworld: Exclusive: Kevin speaks with Ron Davis about a 3rd gen sequencing platform from Ion Torrent: http://bit.ly/dnO8sn
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SACGHS Gene Patent Recommendations Still Controversial
The Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) for the Department of Health and Human Services (HHS) convened again on Friday for a snow-shortened session. One of several items on the Committee’s agenda was a report that the GLR has covered several times (see here and here): Gene Patents and Licensing Practices and Their Impact on Patient Access to Genetic Tests. With the threat of a blizzard looming, the meeting was unexpectedly short, with only a pair of public comments followed by the Committee’s vote to approve the report.
The report itself will not be available for several weeks, but the six recommendations on gene patenting and licensing approved by the Committee this past October continue to provoke a heated response. The Biotechnology Industry Organization (BIO), along with former Senator Birch Bayh (of Bayh-Dole Act fame) and others, held a Friday press conference to denounce – again – the report’s recommendations.
The SACGHS Recommendations. Most of the recommendations are uncontroversial, urging the Secretary of HHS to convene stakeholders to “explore” and “encourage” strategies to improve access to genetic testing, enhance patent licensing and ensure that the USPTO is “kept current with the latest scientific and technological developments related to genetic testing and technology.”
So what prompted Bayh’s charge that the recommendations represent “an attempt to send us back to a time when it appeared that American innovation was on its last legs and our economy was in deep distress”?
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Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- RT @DukeIGSP: Myriad’s profits rise. CEO says publicity from gene patent suit has benefited company. http://bit.ly/cRU1KR
- Costs Saving from Personalized Medicine Sought by PBMs, Employers, Pharma Face Legal, Privacy Hurdles http://bit.ly/dsn4hB (@crossborderbio)
- CancerGuide closes on $10.5M in financing; secures LabCorp as partner: http://bit.ly/d9vTdi
- RT @markgfh: My Eureka Science Matters column about balance in science reporting http://bit.ly/askPCn
- New CDC RFA for “Knowledge Synthesis Center for Evaluating Genomic Application in Practice & Prevention”: http://bit.ly/cAQZ91
- SOLiD Gold: Dietrich Stephan on Ignite’s Partnership with Life Technologies http://bit.ly/dhgf1a (via @bioitworld)
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