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 .
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