International MPN News, Science & Opinion

Fallout from 23andMe…on to Patient Support Lists

I never met Marina Peed.  I’ve read her articles and some posts and respect the way she thinks and expresses herself.

     But when she surfaced last week in an MPNforum comment on the 23andMe story praising the heated, civilized discussion taking place over the MPN database, I must admit to feeling intense gratitude.  These past weeks, the conversation away from the MPNforum has sometimes been brutal.                 Investigative journalism creates a narrow bridge that joins ignorance and revelation…and there’s a bloody fate waiting for us among the rocks below without the safety net of civility.

            The safety net was severely torn by the ferocity with which some of us chose to defend our positions, attack our perceived detractors, and challenge the essential core of what we are doing.  When we first started publishing, one List administrator went so far as to prohibit any mention of MPNforum.  Another List simply selectively boycotted our posts.  But the climax came with publication of the 23andMe story.

            The research on this one story took more than six weeks.  Some 14 people were directly involved.  The science was vetted by world class geneticists and molecular biologists on background.  Representatives of Federal and State agencies were interviewed along with the key operational people at 23andMe, by phone, e-mail, and in-person.

 
Our aim was to explore the opportunity and the risk and present a balanced, fair report so readers of MPNforum could make their own informed decisions as to whether or not they wanted to participate 

At some point anyone would have to despair at the fallout. 

            Several people at 23andMe are hurt and angry at our coverage.  A fellow patient and friend accused us of censorship.  There was strong dissent among members of our own Editorial Board over publishing the report.  One of the administrators of an MPD List, misinformed about the details of the initiative and clearly ignorant of our published story, suggested we might be taking money from 23andMe.

            Thankfully, the discussion in Forum comments and the follow-on posts to the MPNforum Facebook page – a private page for MPNforum subscribers —  has been spirited, knowledgeable, wide open… and civil.

A quick progress report

            When we all got together to start MPNforum we raised the question of what we were doing.  Starting an on-line magazine, without paid staff, without backing, without anything beyond the desire to help all of us come together in living color out of the black and white shadows of a daily e-mail exchange – however warm and supportive – is no small task.

            Above all, it meant enlisting the support of our MPN community.  Our readers are our writers and editors. Every writer for MPNforum is an MPN patient or caregiver. We share a common disease, a common challenge and, at least in these pages, a common opportunity to tell our stories, exchange information and air our concerns in living color, with photographs, charts, and graphics.  

            Our opening act, at least in that sense,  has been successful.  We’ve come to know each other a bit better.  Together, our community writers have produced memorials, love stories, art exhibits, interviews with scientists, clinical investigators, patients,  and drug company CEOs; in-depth reports on clinical trials and new drug releases; and broadcast their opinions and perspectives via columns and comments.  More than 20,000 visitors came to our pages in our first three months.

Next Up…MPN Patient Support Lists….

           The lead story in September’s MPNforum,  “Evolution of On-line Patient Support,” focuses on the founding of e-mail patient support lists.  This, the first of a multi-part series, spotlights  three American lists and one of the founders who played a significant part in our MPN community history.

            These lists are central to many of us, a lifeline and a tight community within our larger community.

            We will do our best, but given our own limitations and myopia putting together a credible portrait of this invaluable resource for MPN patients is bound to miss the mark in some areas.  And yet these Lists play too large a role in our daily community life to ignore.

            Since most of us participate in e-mail based patient support lists, and feel loyalties to one or more of these groups, it will take many of us to produce the multi-faceted true history.  This is an opening chapter, a version of the story.  

>>A Call for Contributions>>  You can contribute to the story by sending your anecdotes, observations, and opinions to us – ourMPNforum@gmail.com — for possible inclusion in the article.  Please note whether or not we may quote you directly.   You can also help amplify the history and add dimension and color  to this story after publication via your published comments.

            Either way, let’s keep it accurate, colorful and, of course, civil. We’re all in this together.

  Thanks,

         Zhen

zhenyasenyak@gmail.com

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