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ResourcesHuman Research Ethics(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)

 


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Forty years on from a foundational report on how to protect people participating in research, cracks are showing, warns Nathaniel Raymond.

One of the primary documents aiming to protect human research participants was published in the US Federal Register 40 years ago this week. The Belmont Report was commissioned by Congress in the wake of the notorious Tuskegee syphilis study, in which researchers withheld treatment from African American men for years and observed how the disease caused blindness, heart disease, dementia and, in some cases, death.

This item obviously relates very specifically to the origins of the US human research ethics arrangements and the operation of IRBs, but the questions it poses are salient to Australasia.  The oft repeated statement: “But the information is already published and so is in the public domain and so is exempt”.  Is no longer helpful. We have provided a list of related items.

The Belmont Report lays out core principles now generally required for human research to be considered ethical. Although technically governing only US federally supported research, its influence reverberates across academia and industry globally. Before academics with US government funding can begin research involving humans, their institutional review boards (IRBs) must determine that the studies comply with regulation largely derived from a document that was written more than a decade before the World Wide Web and nearly a quarter of a century before Facebook.
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It is past time for a Belmont 2.0. We should not be asking those tasked with protecting human participants to single-handedly identify and contend with the implications of the digital revolution. Technological progress, including machine learning, data analytics and artificial intelligence, has altered the potential risks of research in ways that the authors of the first Belmont report could not have predicted. For example, Muslim cab drivers can be identified from patterns indicating that they stop to pray; the Ugandan government can try to identify gay men from their social-media habits; and researchers can monitor and influence individuals’ behaviour online without enrolling them in a study.
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