Tyranny of the Gene by James Tabery;

Author:James Tabery; [Tabery, James]
Language: eng
Format: epub
Publisher: Penguin Random House LLC
Published: 2023-08-15T00:00:00+00:00

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The second week of June 2014 was a particularly momentous one for the National Institutes of Health. The National Academies delivered its scathing review of the National Children’s Study. On a more positive note, Collins was invited to meet with President Obama for reasons that had nothing to do with the study of kids. The president was looking toward the final years of his presidency and was interested in announcing a major initiative at the intersection of genomics and health, an extension of his investment in personalized medicine from his time as a senator. Collins and the NIH were invited to develop an idea for what shape that initiative could take.

This was the opportunity that Collins had been seeking since 2003. He had tried to take his proposal for the American Family Study, alongside Duane Alexander, to President George W. Bush in his first term but was turned down. He’d offered, without Alexander, the American Gene Environment Study to the secretary of health and human services in Bush’s second term, but Michael Leavitt wouldn’t provide the desired amount of money. When Collins ascended to the role of NIH director in 2009, he took over the agency in the midst of the Great Recession, when funds for major new initiatives were limited, leaving him stuck trying to force the National Children’s Study peg through a personalized medicine hole. Now, with President Obama in his second term and the economic turbulence behind, the NIH director was encouraged to suggest something bold.

Collins gathered a team of his closest and longest-serving colleagues to take the plan that they’d been conceiving for more than a decade and turn it into something suitable for the current occupant of the Oval Office. They sent to the president a two-part plan to give all Americans access to the genomic medicine revolution—first, a major investment in genetic oncology, which was of particular and personal interest to President Obama, and second, a nationwide research initiative designed to recruit a million or more participants into the largest biomedical research program in the nation’s history.

In October, as Collins’s advisory committee was assessing whether the National Children’s Study was “feasible, as currently outlined,” the NIH director traveled to the White House to meet the president. The Oval Office is smaller than one might expect, and the sense of history fills the space with a tangible magnitude. Portraits of George Washington and Abraham Lincoln stared down at the guests who took their seats on couches before President Obama; a bust of Martin Luther King Jr. looked on. An enormous rug encircled the sitting space, rimmed with quotations from past presidents. From Theodore Roosevelt: “The Welfare of Each of Us Is Dependent Fundamentally on the Welfare of All of Us.”

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