Weekly Twitter Roundup: Personalized Medicine Edition

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. In addition, this past week I attended the Partners Healthcare conference on Personalized Medicine, and provided live updates from a number of the sessions. So, this version of the weekly Twitter roundup comes in two sections: the regular roundup followed by my Tweets from the conference.

Part I: A recap of the standard @genomicslawyer Tweets:

  • Good idea from Robinson that research inst. end up w/ deCODE’s data. Unfortunately, looks like it won’t be Wellcome: http://bit.ly/1DOAM8
  • Keith Robison on the demise of gene mapping companies, incl. the newly bankrupt deCODE: http://bit.ly/3lJ6qx (HT @dgmacarthur)
  • Open letter from @23andMe and @Navigenics to Nature: http://bit.ly/1B7FUn
  • DTC Provider @Knome Expands Sequence Service to Research Community http://bit.ly/iD7lS (via @BioITworld, @dgmacarthur)
  • RT @dgmacarthur Oh. My. God. Not sure what is worse: the genetic testing scam, or the appalling approach to parenting: http://bit.ly/320wiD
  • The end of deCODE genetics: are you worried about who holds your DNA http://bit.ly/1KpoBo (via @TimesOnline)
  • RT @Berci: Hey DTC genomics, Stay Private, Stay Alive, Go Public and Die http://ff.im/-bBHOD (via @helixhealthct)
  • RT @blaine_5: I’m looking over my @PathwayGenomics results & will have a write-up on The Genetic Genealogist soon (Note: consultant for PG)
  • Privacy fears as DNA testing firm deCODE Genetics goes bust: http://bit.ly/YIOE9 (via @TimesScience and @markgfh)
  • What ELSI is New? Hank Greely on common prenatal genetic testing and its implications: http://bit.ly/19UFOK
  • RT @bmahersciwriter: RT @patsycat21 And the new director of the US Ntnl Human Genome Research Institute is….Eric Green http://tr.im/F9JM
  • From the archives, and no longer a hypothetical: “What Happens if a DTC Genomics Company Goes Belly Up?” http://bit.ly/JPfTz
  • deCODE Declares? Now What? http://bit.ly/2mMr12 (analysis from the Genomics Law Report)
  • RT @dgmacarthur: deCODE Genetics finally slips into formal insolvency, filing for bankruptcy in a US court: http://bit.ly/23uWC6
  • X Prize Foundation Announces 1st Asia-Based Contender (“Team Cracker”) for Genome Sequencing Prize http://bit.ly/2Fc2xp (HT @OnlineBiotech)
  • Personalized Medicine: The Time Is Now: http://www.personalizedmedicineconference.org/ Heading to Boston tomorrow – DM me if you’ll be there
  • U of Wash-Led Team Publishes Miller Syndrome Exome Sequencing Paper: http://bit.ly/1QDPc7 (via @gw_dailyscan)
  • When the Law Allows Hospital Errors to Remain Secret: http://bit.ly/30peRW (from @WSJHealthBlog)
  • DTC Genomic Research: Revolution or Minor Uprising? http://bit.ly/33uJNC
  • The Open Secret of DTC Medical Genetic Testing: http://bit.ly/1Z7yop
  • A Fundamental Right to Genetic Information (Now More Expensive Than Before): http://bit.ly/14rgUE
  • 23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing http://bit.ly/1BzCum
  • RT @thegenomebook Genetic discrimination legal update: #Kansas has some noteworthy gaps, esp. in life insurance http://bit.ly/3Af9ah
  • 23andMe raises prices, splits its health and ancestry analyses: http://bit.ly/19qB3T (Genetic Future post from @dgmacarthur)
  • New York Times story on the challenges of implementing GINA: http://bit.ly/4gEJJn (HT @slominski)
  • Taking a play out of the @PathwayGenomics playbook, @23andMe splits ancestry/health services (and raises price) http://bit.ly/4EQApv
  • RT @gw_dailyscan: Not Just Taking on Gene Patents, But Tackling the USPTO Too: http://bit.ly/Ut5Oz
  • RT @neandrothal: Larry David gets a DNA test, finds out he is only 67% European: http://bit.ly/2zCq45

Part II: A recap of the live-Tweeting from the Personalized Medicine conference. For more commentary from the conference please visit the #PersMed09 page.

  • My question: in that case, what is the scalable model? How will docs be brought to understand genetic testing on their own #PersMed09
  • Vanier: docs lean heavily on @Navigenics genetic counselors – very high-touch model, not scalable to 10k patients #PersMed09
  • Vanier questioned as to how much MDVIP docs know about the @Navigenics testing they offer #PersMed09
  • Comment: 59% will pay $100k for a wgs, but then balk over a $15 co-pay to see primary doc #PersMed09
  • 10% said “never” – concerns about security cited #PersMed09 Incidentally, who is selling me a whole-genome for 15K?
  • Poll: it currently costs 15k to have genome seq. When will you have your own genome seq? 59% say $100 #PersMed09
  • Vanier: There is tremendous societal interest, even a “mandate” for personal genetic testing. Need to harness this #PersMed09
  • Vanier: if you do a really good family history, do you need genetic testing? FH is notoriously imperfect, esp for non-Mendelian #PersMed09
  • Vanier: constant tension between pop’n genomics/medicine and n=1 and desires of patients #PersMed09
  • Vanier: clinical utility of testing: behavioral change, screening, pgx #PersMed09
  • Vanier “99.5% of @Navigenics biz comes from physicians or medical dirs of large employers” Did I hear that correctly? #PersMed09
  • Vance Vanier, CMO @Navigenics challenges for medical genomics education, evidence, experience #PersMed09
  • Marc Sabatine: clinician uptake of gen testing will req a “landmark case” to get MDs to sit up and take notice #PersMed09
  • Troy Brennan, CVS Caremark: I have a hard time seeing anybody who won’t benefit from personalized medicine #PersMed09
  • Final panel of the conference: “who will benefit from personalized medicine?” Hopefully, patients? #PersMed09
  • Per Lofberg, Generation Health: payors will come along if they understand; dx cos need to be better at payor education #PersMed09
  • Ryan Phelan, DNA Direct: genetic testing starts w/ the patient, and payors will be for improved outcomes #PersMed09
  • Is genetic testing disruptive if it plugs into existing patient->clinician->payor chain of command, or must chain change? #PersMed09
  • Much talk re: difficulties of reimbursement at #PersMed09 That, at least, is one advantage of DTC: individuals pay for themselves
  • Poll: do you think genetic testing is a disruptive technology today? 56% say no #PersMed09
  • Poll: does uncertainty at FDA re IVDMIA reduce investor appetite? 84% say yes, one of clearest polls so far #PersMed09
  • King prospective trials make sense until there are actual diseases. Can’t cram dx into pharma model and expect innovation #PersMed09
  • David King, LabCorp: “we’re against people being able to spit on their blackberries and get the laboratories out of the way” #PersMed09
  • Burrill: “by 2020 we’re going to spit on our blackberries and be genotyped” who knew? #PersMed09
  • Constant, shifting testing for biomarkers that come and go. Payors ask, are biomarkers just one giant up sell? #PersMed09
  • Burrill: huge value for system of pers med, but tough to capture at the level of indiv diagnostic or comapny #PersMed09
  • Noubar Afeyan, Flagship: not going to figure out a priori what pers med means, or how to make $. Going to be plenty of failures #PersMed09
  • challenge for venture side is reimbursement/payment for new technologies. Too many payors, too many models; antiquated system #PersMed09
  • David King, LabCorp: don’t forget about non-genetic biomarkers like bmi, etc. “When all else fails, examine the patient” #PersMed09
  • Touchstone for comparative effectiveness research: breast cancer screening guidelines. Do we have the stomach for CER? #PersMed09
  • Audience polls at #PersMed09 are generally equivocal, in part b/c questions are vague. More specific, directed qs needed
  • Poll: Are insurance companies helping or hindering personal medicine? Slight majority say “hindering” #PersMed09
  • Audience poll: should diagnostics be regulated / reimbursed like drugs? Ans: completely spit, 47/53 #PersMed09
  • Answer: dtc genetic testing isn’t personalized medicine, at least not yet. #PersMed09
  • Panel q: what is the moral of deCODE’s bankruptcy for personalized medicine / genetic testing? #PersMed09
  • Dominant topic of discussion at #PersMed09 small grp lunch: who changes payor/reimbursement model? Government? Industry? Doctors? Patients?
  • #PersMed09 “do you think #hit will play an important role in personalized medicine?” 11% say “no”
  • Personalized med integration must start w/ indiv/patient, scale to pop’n/int’l level, and then translate back to clinic #PersMed09
  • Key question: can #HIT work w/ existing systems to integrate provider, patient, & research data to improve care? #PersMed09
  • At #PersMed09 and it’s standing room only. Current panel on #HIT as enabler for MDs, patients