Apr
7
Genetics just got Personal
Filed Under Blog, healthcare, Industry Analysis, internet, mobile content, Publishing, STM, Uncategorized | 1 Comment
Everyday , like the janitor of an apartment building sweeping the hallways , I protect my readers from posted comments inviting them to sample special car insurance offers , free animal sex movies , or cheap supplies of drugs from Canadian pharmacies . This last area has now turned into a torrent. I deleted nine today. And having watched the crowds last night during a five hour wait for treatment in a Parisian hospital I see and feel just how compulsive a business health is : the workflow of life itself . So small wonder that web life mirrors real life , and that consumer healthcare is a rapidly growing area . And given the size of the topics , and what you need to know to begin to explore the muttered hints given by your doctor or specialist , it is small wonder that a great deal of current content flatters to deceive , or is found too opaque or too dense for effective consumer use . What the field needs is a coherent way for consumers to understand themselves and their conditions in a context which is their property , and which forms a part of their self-knowledge which they bring into play when they have consultations with experts . In fact , an analysis of their starting point on life’s workflow which contextualizes everything else that happens to them .
Well , anyway , it passed the time , did this thought . And recalled a splendid conversation with my daughter , who is planning to set out on a medical education , which took place some days ago . I had alluded to www.23andMe.com , the very interesting start-up site which should be known because it is bringing a new look to genetic analysis ( and is known because its founder , Anne Wojcicki, is the wife of Sergey Brin ). This service , for a price of between $399 and $599 , sends you a saliva test , analyses your sample , finds your relatives out as far as fourth cousins , and then gives you guidance on conditions that may be inherent in your genetic make-up . All fairly crude , of course , but enough to be compulsive -or dangerous.
My daughter opted for the latter . Donning the mantle of an aspiring professional , she could see only too clearly the dangers of knowing enough to be frightened and not enough to be fully informed . And what about employer discrimination , and insurance company refusals to insure known risks ? Clearly it was a minefield and it was best if amateurs ( I qualify here ) kept clear . But I still wonder. I see citizens of the future carrying and trading this type of information as part of a restoration of the balance in their relationships with the medical profession . I feel certain that the avoidance of risk will become a powerful factor in decisions about having children , and I have little confidence left in doctors or politicians when they know best .
And if there is any value in this thought , then it points a finger directly at medical publishing and medical informatics in regard to the communication job that they carry out at present . We all laughed at the very idea in the early days of Open Access that the woman on the Idaho omnibus would be able to make sense of a research article on her child’s cancer . www.23andMe.com has the same problem . Fine graphics , videos and cartoons got us over the ealy explanatory stages ( I loved the English English voice over – an American voice in this context suggests marketing ? ). Then we are in citation country , and gene-talk is very hard to follow . For example , I would need to be paid $599 to understand this :
“Although a variety of factors influence a patient’s ideal dose of warfarin, the genetic variations in the CYP2C9 and VKORC1 genes reported by 23andMe play an important part. In January 2010 the FDA updated warfarin’s label to say that information on these variants can assist physicians in selecting a starting dose of the drug. The agency also provided initial dosage recommendations for patients with different variant combinations. The FDA does not, however, require that genetic testing be done before prescribing warfarin.
Versions of the CYP2C9 gene known as *2 and *3 can slow down the body’s ability to break down warfarin. This causes the drug’s concentration in the bloodstream to decrease more slowly, so the patient needs a lower dose to begin with. Each T at rs1799853 indicates a copy of CYP2C9*2. Each C at rs1057910 indicates a copy of CYP2C9*3.
The normally functioning version of CYP2C9 is called *1.”
But this will change . Our genetic heritage may well be the health equivalent of internet banking . If it is , then medical publishers will need to explain themselves to a much wider readership – or maybe , in instances like Nature Publishing taking on the management of Scientific American , this is already happening . As I walked out of Hotel Dieu into a Spring evening in the square outside of Notre Dame I could already imagine the disintegration and re-integration of medical publishing as we know it , all built around lifetime alerting services updating us on knowledge about research into the subject that most concerns us – ourselves .
Mar
28
Rage , Rage Against the Dying of the Light
Filed Under Blog, Industry Analysis, internet, news media, Publishing, Uncategorized | 16 Comments
I should be writing about Google and China , but I am too angry . Through sadness , despair and incomprehension I emerge on the dark shores of irrational anger with the Man and his doltish acolytes who have sentenced to stagnant death the oldest and at times the greatest of Britain’s serious newspapers . Between now and the offer of the Lebvedev Pound is only a long or short period of decay . At Times Newspapers a total bankrupcy of strategic imagination leaves the once great Thunderer anaesthetized and awaiting only dementia and demise .
This may sound over dramatic , but the arrival of the £1 per day /£2 per week pay wall at the Times needs to be seen this way , or as some sort of outlandish joke . The problem facing the Times was about recreating its relationships with eitherits advertisers or with its readers . There is no strategic reason for the paywall : it is simply the expression of tired managerial brains , cudgelled by a demanding owner , saying ridiculous things like ” Well , we put so much effort into it that we should be able to get a £1 for it …” or , even worse , ” People don’t recognize our value so we must make them pay for it …”
There is great value in the Times , even if too much of its news reporting is agency rewrites . There is value in its journal of record status , in its commentators and in its editorial position , when that does not refect its owner’s desire to play political kingmaker . Under Murdoch it is far reduced from even its Thomson days . Its brand still has power and value . What was needed was the skill and insight to stop and start again. What is the user relationship online ? What value add features , branded by the Times but searching the entire web through a Times-created focus , are valuable enough to become desktop attributes , a way of organizing and personalizing the news for the fixed , or seperately , for mobile markets ?What rich subcommunities does the Times have around its citeable Law Reports , or its obituaries , or its classifieds , that could become a platform for user exchange within the Times brand ? While Times Online has done some good and innovative things over the past five years , none of them got a look in at the end . Instead we got the crass decision : it is a newspaper in the real world , and being no different on the Web , we charge £1 for it
I learn from Jeff Jarvis and Michael Wolff in various quotations that Rupert Murdoch does not use the Internet , but that he has recently started to use email . This may explain the stumbling , stubborn road to ruin on the Web . My Space was bad enough:there was an opportunity to innovate and stay in front . Arguably Facebook should never have made it if Murdoch’s men had not thought that buying market share was enough ,and had realized instead that buying market share just gives you an opportunity to tune and develop service attributes from the front of the market , not the back . .
Now News is ailing . They provide casebook examples of how difficult it is for real world media executives , even if they are His Children and Trusted Cronies , to make network publishing decisions without any network publishing experience . With advertizing markets down , growth in satellite curtailed by regulators and the Chinese government , and Fox becoming a politicized space that does not appeal to all communities and advertizers , it is possible to imagine the rise and fall of this media Imperium within the single generation of a remarkable dealmaker who never really understood the media he owned . None of which quite quenches my anger about the Times . .
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