Intellectual Climate Change: Can we Survive the Rising Sea of Data in the 21st Century?

Happy New Year!  It’s a whole new decade – time for some summing up, and some looking forward.

If I had to pick a defining image of the last ten years, it would be a tidal wave – a wave as big as the wall of water that drowned New Orleans, as big as the Christmas Day tsunami of 2004 – a flood not of water but of information that has broken over our collective shores.  Google search “information overload” and Wikipedia (result number 1 of 3,060,000) defines it as a condition resulting from the near instantaneous access to too much information, “without knowing the validity of the content or the risk of misinformation.”

The fact that our ability to produce and disseminate information has entirely outstripped our ability to analyze or fact-check is a reality of modern life.  To be sure, genetics is no exception – what with aCGH and the HGP and GWAS and other technology-driven acronyms spewing out data on the one hand, and the Internet on the other, where PLoS shares server time with the Discovery Institute, generator of creationism repackaged to resemble scientific research.

We might be forgiven for thinking, some days, that genetics is the ground zero of information overload.  But it’s not.  It’s happening everywhere.  Genetic counselors are often appalled at the giving out of genetic information willy-nilly – witness the response on the genetics community to such unwelcome friends in the sandbox as 23andme or DeCodeme – and the knee-jerk reaction is to say that genetic information is special, uniquely powerful, and must be given out by those with specific education and counseling skills (Hey!  That would be us!).

This type of thinking runs along the lines of genetic exceptionalism – the notion that genetics is fundamentally different than other sort of information and must be treated differently as a result – and while in some ways it may be right, it is also increasingly unrealistic. Yesterday’s PhD thesis work is tomorrow’s home-brew chemistry experiment, and microarrays are changing the economics of testing so that panels that once checked for 8 or 9 conditions now check for 300, while full-genome sequencing lurks around the corner, the paperback version of the HGP, available soon on Amazon.com.

What can we do, not to be the ones with our finger in the dike as the information tsunami rises around us like ocean water lapping at the Maldives?  We can’t cut off the flow of information.  We often call for commercial companies to give out information through genetic counselors, but is that really a solution?  The idea of commercial entities that do it “right” rather than “wrong” is comforting, but self-regulation poses inevitable conflicts of interest.

We may have jobs, perhaps good jobs, from companies that need genetic counselors to explain their products to consumers, but that doesn’t mean that, for genetic counselors as a whole, jobs within industry are a solution to the information overload dilemma.  Drug companies hire doctors to promote their pharmaceuticals, and while there is nothing wrong with working for a drug company, employing physicians is not the functional equivalent of a regulatory framework.

Across all fields from journalism to philanthropy, people are discovering ways to act as the mediator between the flood of information and the end users. The next-generation winners in information management are those who will be able to sift through and shape the available data flow into a manageable and trusted form – information brands.  We need to be consumer reports; we need to be wikipedia; we need to be CNN – we need to be a trusted filter that distinguishes true and false as well as necessary and unnecessary for the consumer of genetic information.  Jobs within industry will flow from that branding – what else do we bring, that a pamphlet or a webpage could not just as effectively communicate? – but they will not create the brand.  What will?  That is the million dollar question.

2 Comments

Filed under Laura Hercher

2 responses to “Intellectual Climate Change: Can we Survive the Rising Sea of Data in the 21st Century?

  1. Great post Laura! In reading this I am reminded of a couple of things:

    1. The book “A Whole New Mind: Why Right Brainers will Rule the Future” by Daniel Pink (http://www.danpink.com/whole-new-mind). In the book he discusses how the the information age has given way to a new era in which people possessing qualities of “inventiveness, empathy and meaning” are most valuable in the work place. A really great read for any GC with an interest in this topic!

    2. The interesting post by Hank Greely in the Genomics Law Report ELSI Series a while back (http://tinyurl.com/yklj93t) in which he tackles this subject himself.

  2. Liz

    Great entry, Laura. I have an answer to your last question about who will create the genetic counseling brand — even though you probably intended it to be rhetorical! The National Society of Genetic Counselors is undergoing a branding effort to promote genetic counselors. There is more information available on the NSGC homepage (www.nsgc.org) and look for more in the NSGC’s President’s blog http://nsgcpresident.blogspot.com. Expect a new entry on branding this week!

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