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International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism)

Published online by Cambridge University Press:  01 January 2021

Adrian Thorogood  and
Ma'n H. Zawati
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Extract

In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era.

This article reviews international privacy norms governing human genomic biobanks and databases. It will not directly consider biobanks established for other health-related purposes, such as screening or therapy. A genomic biobank is “a hybrid infrastructure,” an organized collection of human biological material combined with associated health information: physical measurements, outcome data in medical records, and epidemiological information, as well as genomic data derived from the samples.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 4 , Winter 2015 , pp. 690 - 702
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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