The personal data is political
- 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
- 2018. The personal data is political. PeerJ Preprints 6:e27079v1 https://doi.org/10.7287/peerj.preprints.27079v1
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.