AAAS comes to Boston: Personal genetics session

  1. First, a little self promotion : Prior to the big meet, scientists and journalists met to talk about evidence as part of the #askforevidence campaign. 
  2. Loved chairing discussion on science and the media w great panellists: @tinkerrr @kweintraub, Willy Lensch, @philts2. TY! #askforevidence
  3. On to the meeting 
  4. On to the genetics session at AAAS: 
  5.  Dr. Mira Irons from Children’s Hospital Boston spoke:  
  6. Dr. Irons : Pers. sequencing not ready for prime time, but train left the station and we’re all playing catch up #persgen#aaasmtg
  7. Irons: “How much more do you find out from genomic sequencing?” that you couldn’t find out from family history? #aaasmtg #persgen
  8. Right now no extra info but more uncertainty in full genome vs exome, Mira irons #AAASmtg #persgen
  9. “We’re finally at the point where genetics and genomics will impact medical care…” #persgen #aaasmtg
  10. “…but we haven’t given providers the info they need to use effectively and practically” #persgen #aaasmtg
  11. @CO201: #aaasmtg $1000 genome, $1 million interpretation. Irons frm Bos children’s #genomics
  12. 23andMe founder Brian Naughton also spoke: 
  13. #aaasmtg 23&me up w/$99 sale price for personal gene sequencing.
  14. Patients are now approaching their doctors with their 23andMe data – need to be able to help them interpret it #AAASmtg #persgen
  15. The legal perspective from Harvard’s Dr. Jasanoff:
  16. RT @GenomesAreUs: Sheila Jasanoff of Harvard, speaking on citizenship and personal genomics #AAASmtg #persgen
  17. Law and #Genomics –Patient has become a partner in diagnostics and is now an advocate for change #aaasmtg
  18. Pers. genomics Not only a science revolution but a constitutional moment that involves bio stuff. Jasanoff #aaasmtg
  19. Lawyer: Personal sequencing is not standardized, issues of transparency , oversight , professional sanctions — #aaasmtg #persgen
  20. RT @DMSPolicyPATH: Jasanoff: “Law offers another language to talk about the topic [of personal genomics]” #persgen #AAASmtg
  21. RT @DMSPolicyPATH: Jasanoff: Genomics means: disease->predisposition, symtoms->presymptomatic, patient->customer #persgen #AAASmtg
  22. Jasanoff – Need to think more about responsible uses of data and privacy #AAASmtg #persgen
  23. MT @GenomesAreUs: Informed consent simple for one gene, how do you get informed consent for while genome, not scalable #AAASmtg #persgen
  24. From the National Human Genome Research Institute at NIH:
  25. RT @GenomesAreUs: Different DTC companies: results are same, interpretation different @drgitlin #AAASmtg #persgen
  26. RT @DMSPolicyPATH: @drgitlin : “Regime of relatively lax oversight [over DTC genome testing] looked like it was going to change…” #AAASmtg
  27. When u sequence a genome, u get 4 million data points for an individual — Gitlin NHGRI Nat Human Genome Research Institute #aaasmtg
  28. NHGRI speaker: Whole genome sequencing in research = complex regulatory landscape. Informed consent is super complicated. #aaasmtg #persgen
  29. RT @DMSPolicyPATH: @drgitlin – Long time between bench and clinic – human genome completed only 10 years ago #AAASmtg #persgen
  30. @drgitlin Even if Myriad loses patent case, patent will expire & co. will still have huge database of #BRCA mutations #aaasmtg #persgen
  31. For more on the meeting, check out the AAAS newsroom and podcasts:

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