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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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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Up Next in Gene Patents: Waiting for a Ruling (Again) and SACGHS Meets (Again)
GenomeWeb has a recap of today’s hearing in the Myriad case, including the not-at-all-surprising decision that there was no summary judgment decision issued from the bench. From all accounts the case appears to have been argued along the lines set forward by the parties in their briefs, with no obvious surprises presented by either party during oral argument. As for a decision, according to GenomeWeb, “Judge Sweet did not say today when he expects to make a decision in the case.” Interested observers, including the Genomics Law Report, can expect to wait some time – at least several weeks, if not months – before a decision is handed down. That decision, no matter which way it falls, is likely to produce an appeal to the Second Circuit.
In the meantime, those that simply cannot get enough of the gene patent debate are reminded that the Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) is convening again this week to finalize its report on biotechnology patent and licensing policy. As previously reported by the GLR, the last SACGHS meeting reviewed and approved several recommendations (pdf) from its Gene Patents and Licensing Task Force, including proposed exemptions from liability for infringing patents when (i) making, using, ordering, or selling tests for patient care purposes or (ii) “in the pursuit of research.”
While the SACGHS approved the recommendations, final review and approval of the Committee’s report on Gene Patents and Licensing Practices and Their Impact on Patient Access to Genetic Tests was tabled until the February meeting. The recommendations and the draft report generated some pushback last fall so, Friday morning, the Committee will be reviewing those additional comments and “coming to closure” (pdf) on the report. The GLR will be listening in. Interested readers can find information about the SACGHS meeting here.
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:
- Healthcare hacks on the rise. Attacks doubled in Q4 thanks to sensitive data, “large attack surfaces”: http://bit.ly/d0izMg
- Life Technologies Fires Latest Sequencing Salvo: http://bit.ly/dspF0d
- RT @Berci: Microsoft HealthVault and Siemens Bringing PHR Platform to Germany – And a Look at a German EHR http://ff.im/-f0mQ3
- RT @matthewherper: Gene machine wars get hotter, hotter, hotter: http://bit.ly/copmcc
- RT @GenomeWeb_News Life Technologies, Ignite Institute Team on Sequencing; Ignite Buys 100 New SOLiD Systems http://bit.ly/bWzSAt
- The future of PGx/Dx? @Duncande uses iPS cells -> genetically matched heart cells -> test heart drugs for toxicity http://bit.ly/Vme2m
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