Monday, December 12, 2016

Arthritis and diversity social policy

 Image result for arthritis

Two friends have described to me their terrible problems with rare forms of arthritis, so today I decided to look at NIH and see what sort of research was going on at the federal level of support.  That took me to The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).  The first statement I encountered was not about this challenging debilitating constellation of diseases, but about diversity!  Yes, that diversity--they've even changed the name of the Precision Medicine Initiative to All of Us. Read the message of the "guest director."
Since its inception, the Precision Medicine Initiative® (PMI) Cohort Program — recently renamed the All of UsSM Research Program — has been deeply committed to diversity. This commitment was inherent in the President’s vision when he announced the program in January 2015, with the goal that this massive new effort scale the benefits of precision medicine across health statuses and across populations.
 Our goal is for people of all ages, races and ethnicities, sexual orientations, and socioeconomic statuses to join us in this unprecedented effort. To achieve this, we aim to build trust through intensive community outreach and engagement, maintaining the highest standards for security and privacy, and providing a meaningful value proposition to the people who generously share their information with us including through a firm commitment to returning research information. We share with NIAMS the commitment to multicultural outreach and the goal of bringing populations historically underrepresented in biomedical research into the fold — and ensuring that precision medicine discoveries yield meaningful advances to all communities across the United States

Good luck, sir, on sorting out the "diversity" goals of this administration with transgendered folks who don't have the cell, muscular or bone structure of the sex they are pretending to be. Be careful or your researchers will be called transphobic.

The guest director, Eric Dishman's message also alerts us to the real reason for the Electronic Health Records foisted on us and medical community through ARRA funding in 2009 at great cost, from which it hopes to use our data.  Good luck if you need mine or my husband's, because it takes months to move them a mile or so down the road from Riverside hospital to our doctor's office.  A carrier pigeon would move faster.

Eric Dishman and Ted Talk

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