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The clock is ticking for experts charged with designing a US government programme to collect genetic, physiological and other health data from one million volunteers over the next two decades. The plan for the US$215-million Precision Medicine Initiative (PMI), announced in January, is due in the next few weeks — a daunting deadline, in part because the effort’s priorities include filling racial and socio-economic gaps left by other long-term studies.
The US National Institutes of Health (NIH), which is leading the PMI, is weighing ambition against a desire to avoid the mistakes that torpedoed its National Children’s Study, which would have tracked 100,000 children from birth to adulthood. The agency abandoned that effort in December 2014, after recruiting just 5,700 participants at a cost of US$1.3 billion. It cited overly complex study design and goals.
Clinical trials in the United States have historically relied on enrolling white participants from higher socio-economic levels, despite the fact that ethnic minorities make up about 40% of the country’s population. Of the 58,160 lung-disease studies published between 1993 and 2013, for example, less...
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