Downing: Also Stanford's Medicine X http://t.co/kZHx6QXvMm @StanfordMedX acknowledged 'like a flocking ground for pts' #ASHG15
10:09am October 8th 2015 via Hootsuite
Downing: Other resources: http://t.co/hdZtXxIW4f and http://t.co/NxV78qvuG4 others Facing our risk of cancer empowered #ASHG15
10:07am October 8th 2015 via Hootsuite
Downing: Acknowledged early connection to @mason_lab and found mutation hashtags on Twitter #HCChat illustrated #ASHG15
10:06am October 8th 2015 via Hootsuite
Downing: An idea: ePatients, who know the research questions, patients not as p-values but as partners. Disease communities #ASHG15
10:05am October 8th 2015 via Hootsuite
Downing: From the patient point of view - untranslated. Consent is 8pg of legalese, data isn't shared and 'survey fatigue' #ASHG15
10:02am October 8th 2015 via Hootsuite
Downing: Shows crying woman meme - filled out so many surveys, 'he never called me back.' #ASHG15
10:00am October 8th 2015 via Hootsuite
Downing: The problem is still the amt of data still unavailable. 2.3M at-risk individuals; 1100 genetic counsellors. Titanic illus #ASHG15
9:59am October 8th 2015 via Hootsuite
Downing: 'I started planning my life around getting cancer' and then she becomes aware of the Myriad case, and starts advocacy #ASHG15
9:58am October 8th 2015 via Hootsuite
Downing: After 6y - mammography not ideal for screening due to breast density. Her blog: a safe place to tell her story #ASHG15
9:56am October 8th 2015 via Hootsuite
Downing:6y later - prophylactic bilateral mastectomy. Meantime - aggressive surveillance. #ASHG15 Website: http://t.co/u1forwvXvr
Downing: Better comm and clinical care: no regrets to be tested. Strong family history too. How should she look at risk? #ASHG15
9:54am October 8th 2015 via Hootsuite
Downing: Her story: a TG mutation in BRCA. She's a previvor: 87% lifetime risk of Br ca, 60% ov ca. Her decisions - controversial #ASHG15
9:53am October 8th 2015 via Hootsuite
A Downing (Advocate) ePatients and the power of a connected community. #ASHG15
9:52am October 8th 2015 via Hootsuite
Neeley: Cites 94 Flischoff paper PDF http://t.co/Y8LWMI5BpY 'risk perception and communication unplugged' #ASHG15
9:46am October 8th 2015 via Hootsuite
Neeley: People need to see science is 'done by people they can relate to' #ASHG15
9:44am October 8th 2015 via Hootsuite
Neeley: Competent varies between admiration / envy. Warm varies between sympathy and contempt. #ASHG15
Neeley: Mapping warmth and competence. Interesting results from 06 ref http://t.co/ziI5J8Nz77 #ASHG15
9:43am October 8th 2015 via Hootsuite
Neeley:What's the goal? Defending and knowledge are the 2 top reasons from survey (Dudo, Besley unpubl) #ASHG15
9:37am October 8th 2015 via Hootsuite
Neeley: Animals that fight - others are watching you as well. 2014 ref http://t.co/MD25JpE84p #ASHG15
9:35am October 8th 2015 via Hootsuite
Neely: We can only increase the signal, rather than doing anything about the noise (which may be signal to others) #ASHG15
9:33am October 8th 2015 via Hootsuite
Neeley: Sharing findings - but look at the world in a different way. Communications in reefs: damselfish. #ASHG15 http://t.co/seXnARvrB8
Neeley:'No one has to read your story either'. She works with scientists on communication - and went from marine biology to writing #ASHG15
9:31am October 8th 2015 via Hootsuite
Liz Neeley (Story Collider) The stories we tell ourselves about science communication #ASHG15
9:27am October 8th 2015 via Hootsuite
Yong: Concludes with a shameless plug - email edyong209 at gmail - for your own stories. #ASHG15
Yong: Points to several pieces and how he came across them. One woman's mutation in The Atlantic http://t.co/HB8VZZ3gRq #ASHG15
9:26am October 8th 2015 via Hootsuite
Yong: Now move away from 'paper of the day'; work in progress, themes, new techniques, new conflicts #ASGH15
9:25am October 8th 2015 via Hootsuite
Yong: Help us tell stories - what's the background? What motivates and excites you? What was hard about it? All give better persp. #ASGH15
9:24am October 8th 2015 via Hootsuite
Yong: He learns over time - as people are vocal, and self-correcting. Good journalists and good scientists, post-pub peer review #ASGH15
9:23am October 8th 2015 via Hootsuite
Yong: Puts up this figure: http://t.co/EzUs8Ddq7R how bad scientists don't speak to anyone #ASHG15
9:22am October 8th 2015 via Hootsuite
Yong: "...but I'll happily shiv you, and shiv you to your face' if he needs to challenge it. #ASHG15
9:21am October 8th 2015 via Hootsuite
Yong: We can do a disservice if it is only cheerleading. Journalism matters - he'll happily hang out with scientists, but... #ASHG15
9:20am October 8th 2015 via Hootsuite
Yong: Science editor for the Guardian UK: his manifesto here http://t.co/4VQwHpJN8b #ASHG15
9:19am October 8th 2015 via Hootsuite
Yong: He has been criticized for including criticism from other scientists. His loyalty is to his readers. #ASHG15
9:18am October 8th 2015 via Hootsuite
Yong: People moved by urge to find out more; or ego; or desire for power. Limitations as well as potential of technology. #ASHG15
9:17am October 8th 2015 via Hootsuite
Yong: Issues of replicability; science is about fierce debates, lingering controversies, and what we don't know yet. #ASHG15
Yong: Gives examples of work - single-celled eye, science museum of microbes. But also - hype around microbiome. Oxytocin hype #ASHG15
9:16am October 8th 2015 via Hootsuite
Yong: Science communication - portray science in a positive light. Journalism also often does this. But not promotion, also critic #ASHG15
9:15am October 8th 2015 via Hootsuite
Yong: But others have not been helped as well - no cure, what science journalism means: provides hard questions. #ASHG15
9:14am October 8th 2015 via Hootsuite
Yong: Lilly has graduated HS, now onto college. After writing up ADCY5 here http://t.co/sm10ZLYzxP many others helped #ASHG15
9:13am October 8th 2015 via Hootsuite
Yong: 2nd story via @erictopol and a family child Lilly w/a long diagnostic odyssey. ADCY5 gene, suggested treatment #ASHG15
9:12am October 8th 2015 via Hootsuite
Yong: His take Feb '15: http://t.co/o05ZMLupin and effort to remove 'misleading information' #ASHG15
9:10am October 8th 2015 via Hootsuite
Yong: Media and methods and conclusions - criticisms from around the web from microbiologists etc. 'No platypuses either' #ASHG15
9:09am October 8th 2015 via Hootsuite
Ed Yong at #ASHG15 - is that a tablet he uses for notes? http://t.co/9OpW613V97
Yong: Starts with the NY Subway story from @mason_lab and 'Bubonic plague found in NYC Subway' #ASHG15
9:07am October 8th 2015 via Hootsuite
Ed Yong (Writer) “Nobody has to read this crap”, or Why science journalism is not science communication and why that matters #ASHG15
9:06am October 8th 2015 via Hootsuite
Gunter: Also mentioned the registry's Reddit announcement. (My first ever tweet with the term #ASHG15 and Reddit, yikes.)
9:05am October 8th 2015 via Hootsuite
Gunter: Methods of communication - 4M impressions from an Autism chat; 1174 tweets. 3q29 deletion registry http://t.co/zkV0f2ujRj #ASHG15
Gunter: Why science communication? Top 25 TED genetics: Between Wendy Chung, Francis Collins, but others that really shouldn't ASHG15
9:03am October 8th 2015 via Hootsuite
@idiotslowdown Oops, fat-fingered tweet. It was Yuval Itan of Rockefeller Univ (St Gile Lab
8:25am October 8th 2015 via Hootsuite in reply to idiotslowdown
Houghton: Their RNA performance is better compared to flow, expanding targets is ongoing. Goal: both genetic and immune dx #ASHG15
8:22am October 8th 2015 via Hootsuite
