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Why We Need a New Social Contract for Data in Healthcare

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Why We Need a New Social Contract for Data in Healthcare

World Economic Forum,

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The promise of big bio-data medical breakthroughs can only be unlocked if individuals give access to their data.

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Imagine a medical researcher trying to understand the myriad factors – socio-economic, previous conditions, progression of lab results over time – that indicate, contribute to or cure disease. Previously, amassing the necessary amount of data would have been near impossible. Now, big bio-data dwells among us, but there are still obstacles standing between researchers and the massive amounts of information needed to reach the health care breakthroughs on the horizon. In this World Economic Forum report, bioethics experts Peter Mills and Jennifer Miller discuss medical data.

Summary

There are many pots of gold at the end of the big bio-data research rainbow: individualized treatment; evidence-based measures to fight preventable disease; and an understanding of how every individual’s genetic blueprint is both similar to, and different from, that of others – plus how environmental factors interact with genetic predispositions to influence health outcomes. But there are plenty of obstacles to this data-driven utopia. One is the historical division between health care and research. A great deal of data is “locked up” in private health systems and commercial...

About the Authors

Peter Mills is the assistant director of Nuffield Council on Bioethics. Jennifer Miller is the founder and president of Bioethics International.

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