The personal data is political

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1 Lawrence Berkeley National Laboratory, Berkeley, California, United States of America
2 Open Humans Foundation, United States of America
3 Helen Wills Neuroscience Institute, University of California, Berkeley, Berkeley, Californai, United States of America
DOI
10.7287/peerj.preprints.27079v1
Published
Accepted
Subject Areas
Genomics, Neuroscience, Ethical Issues, Data Mining and Machine Learning, Data Science
Keywords
genetics, personalized medicine, neuroscience, data sharing, diversity, open data
Copyright
© 2018 Greshake Tzovaras et al.
Licence
This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, reproduction and adaptation in any medium and for any purpose provided that it is properly attributed. For attribution, the original author(s), title, publication source (PeerJ Preprints) and either DOI or URL of the article must be cited.
Cite this article
Greshake Tzovaras B, Tzovara A. 2018. The personal data is political. PeerJ Preprints 6:e27079v1

Abstract

The success of personalized medicine does not only rely on methodological advances but also on the availability of data to learn from. While the generation and sharing of large data sets is becoming increasingly easier, there is a remarkable lack of diversity within shared datasets, rendering any novel scientific findings directly applicable only to a small portion of the human population. Here, we are investigating two fields that have been majorly impacted by data sharing initiatives, neuroscience and genetics. Exploring the limitations that are a result of a lack of participant diversity, we propose that data sharing in itself is not enough to enable a global personalized medicine.

Author Comment

This opinion article is submitted to a peer reviewed collection.