The Next Social Media Revolution Will Occur In…Personalized Medicine?
Social media – including Facebook, Twitter and other social networking platforms – are widely credited with fundamentally altering the nature of political discourse and, in some instances, credited as catalysts of political revolution. But social media’s ability to affect change need not be limited to politics, as recent developments in the arena of personalized medicine and consumer genomics continue to demonstrate.
Social Media as a Research Tool. Last month, PatientsLikeMe, an online patient community, made headlines with a study published in Nature Biotechnology in which the company analyzed self-reported data from nearly 600 patients to demonstrate that the use of lithium had no effect on the progression of amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease).
The study’s findings are valuable for ALS patients, who frequently experiment with unproven treatments in an attempt to slow progression of the degenerative disease for which there is not yet an effective therapy. But the long-term impact of the study’s methodological approach, which suggests “that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use,” should be felt far beyond the ALS community.
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 @dgmacarthur: RT @nanopore: Ace coverage of cancer genomes papers by @markgfh @timesscience http://bit.ly/6piUz9
- Interesting research from @decodegenetics on parent-specific genetic effects http://bit.ly/5d7EdR (great summary by @markgfh)
- Health 2.0, Personal Genomics and Open Science: A Talk with Shirley Wu (@shwu) of @23andMe http://bit.ly/7J0PF6
- RT @thegenomebook: In #genomics, it’s time to go beyond ELSI and add a “P,” as in “Personal.” http://bit.ly/7uWS6N
- RT @NatureNews: RT @dgmacarthur Finishing the human genome – very nice article in @NatureNews: http://bit.ly/933ORn
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Protecting Your Brand Name on the Internet
Twenty-four hundred years ago, in the scroll age, the marketing guru Socrates observed, “Regard your good name as the richest jewel you can possibly be possessed of.” In the intervening years, only the technology of communication has changed; the wisdom of protecting your brand name and the goodwill it carries is still valid. For many of today’s businesses that are built on innovative products or services, such as those provided by many of the readers of The Genomics Law Report, the Internet and its social media are the most important methods of communicating with potential customers and collaborators.
Brand protection on the Internet begins with selecting and registering a “domain name.” Domain names are akin to virtual street addresses on the Internet, where the registry or “top level domain” is the name of the street and the string to the left of the “.” in the domain name is the ‘second level domain name.” Thus, “genomicslawreport.com” is the unique address for our site, consisting of the second level domain “genomicslawreport” registered on the popular “com” street. Anyone in the world can find us and no one else publishing there. We have grown jaded about this technological marvel, but a consequence of the domain name system is that every business should want to be sure that it preemptively registers domain names that support its brand and take reasonable and prudent measures to assure that others do not unfairly profit from the goodwill residing in that brand by registering domain names that impersonate, mimic or denigrate the brand or that sell counterfeit products under the brand name.
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)
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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:
- The future of personal genomics? http://bit.ly/4dYwB4 @Knome-20 years “Every medicine you take will be tailored specifically to your genome”
- Pathway Genomics Sets Discount Deal with OptumHealth Allies http://bit.ly/2R2G84 (via @gw_dailyscan)
- Balancing Innovation, Access, and Profits — Market Exclusivity for Biologics http://bit.ly/RkUhy (via @NEJM)
- Genomic Research Continues To Go DTC: http://bit.ly/vCNSe
- “So…One Can Have Their Complete Genome Sequenced…Should I?” http://bit.ly/4wbh1i (from Patrice Milos of Helicos)
- RT @dgmacarthur: Sequencing powerhouse in the East – Bio-IT World profiles the Beijing Genomics Institute: http://bit.ly/3tUkRl
- A good example of how the “DNA mystique” infects media reporting on genetics/genomics: http://bit.ly/CTdBc
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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:
- Op-ed from Jim Watson on what he’s learned (how to stay awake) & avoided (his APOE status) since publishing his genome: http://bit.ly/1zggeh
- New tool for exploring genetic testing landscape: @dnatestindex Has atypically complete list of genetic test providers: http://bit.ly/2f8FLW
- Gaps in GINA: CA prohibition on genetic long-term care discrim (not covered by GINA) may have expired http://bit.ly/2OSieW HT @thegenomebook
- Ars Technica has a very helpful tutorial on the sequencing process used by @CompleteGenomic http://bit.ly/4dY7Rz
- Completing the Personal #Genomics Toolkit: http://bit.ly/EjWnq What to take away from the @CompleteGenomic announcement
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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 @dgmacarthur: Cell tweeting article mentions @girlscientist, @phylogenomics, @sciencebase, and my cautionary tale: http://bit.ly/2HQjj6
- “Privacy & Ownership of an Individual’s Personal Genetic Information” http://bit.ly/2sEBrK (from Jennifer Sweeney of @Knome)
- RT @dgmacarthur: New Scientist has a piece on @23andMe’s GWAS presentation at #ASHG2009, quoting me: http://bit.ly/1N4Xw2
- RT @DNAnetwork Would you submit your DNA to get a job? http://bit.ly/4nZmwE A different question this year than last, following GINA
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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:
- “We need to work together to expand access to genetic testing” http://bit.ly/23NPFD (from Jack Lord of @Navigenics)
- RT @nanopore: $250 million GE Healthcare fund highlighting importance of preventative medical technologies. Smart fund. http://bit.ly/bHnRv
- RT @GenCounsNews: Interesting article about the availability of genetic testing in Israel, and the laws surrounding it: http://bit.ly/2Cg4SP
- RT @lukejostins: Summing up the 1st day of #ASHG2009: Rare Variants, & the 1000 Genomes Project « Genetic Inference http://bit.ly/uSHum
- Kaiser’s Massive Genetic Database Leverages Its Patient Population (But It’s A One Way Street): http://bit.ly/vOKK6
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The 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:
- What ELSI is New? “Personalized Medicine in the Web 2.0 Era” http://bit.ly/PJZHh (from @Berci)
- To Share or Not to Share: That is the Question http://bit.ly/1Ziz9j Should clinically relevant genetic research be returned to participants?
- Detailed analysis of the Human Genetics Commission’s draft principles for DTC genetic testing: http://bit.ly/pab7b
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The 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:
- What ELSI is new? Informed Decision-Making via Registry for Genetic Tests http://bit.ly/S8yVS from @geneticalliance
- Off to Charlotte Biotechnology Conference to speak about commercialization strategies in genomics & personalized med: http://bit.ly/4aqsdU
- New Opinions on DTC genetic testing (a review of the nature op-ed piece by Venter et al.): http://bit.ly/3EMwCj (via @PHGFoundation)
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