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Biomedical Knowledge Must Be Mobilized to Save Lives, Not Privatized in the “Last Mile”

By JOSHUA C. RUBIN JD, MBA, MPH, MPP

Joshua C. Rubin

Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain access to its customers’ genomic data, reignited a national dialogue vis-à-vis our rights to our data, especially our health data. Three years ago, our nation’s first National Coordinator for Health IT foresaw an impending “gold rush” for valuable personal health data. Myriad headlines such as Bloomberg’s “IBM Buying Truven for $2.6 Billion to Amass More Health Data” proved him right and fueled this national dialogue.

However, there has been far less discussion about the flip-side of this coin: accessibility of knowledge gleaned from people’s data, by the people whose experiences contributed to its development and the people who need it to save lives. Policymakers have noted that, “We must develop a communications system so that the miraculous triumphs of modern science can be taken from the laboratory and transmitted to all in need.” Unfortunately, that statement, attributed to Senator Lister Hill and inscribed on a wall inside the U.S. National Library of Medicine (the world’s largest biomedical library), was made in 1965! That predates by a year Dr. Martin Luther King Jr.’s observation that, “Of all the forms of inequality, injustice in health is the most shocking and inhuman.” Indeed, inequitable access to knowledge, resulting from society’s failure to realize Senator Hill’s vision over half a century later, exacerbates such injustices while costing lives.

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