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Privacy, anonymity and subjectivity in genomic research.

Authors :
McGonigle I
Shomron N
Source :
Genetics research [Genet Res (Camb)] 2016 Jan 14; Vol. 98, pp. e2. Date of Electronic Publication: 2016 Jan 14.
Publication Year :
2016

Abstract

The use of non-anonymized human genome data is becoming increasingly popular in research. Here we review the proceedings of a special meeting on this topic that took place at European Molecular Biology Organization (EMBO) in December 2014. The main points discussed centered on how to achieve 'anonymity,' 'trust,' and 'protection of data' in relation to new genomic technologies and research. Following our report of this meeting, we also raise three further issues for future consideration: the harmonization of international law in relation to genetic data protection; the complex issues around the 'dividual' nature of genetic data; and the growing commercial value of personal data. In conclusion, we stress the importance of scientists working in the area of genomic research engaging in interdisciplinary collaborations with humanities and social science scholars and addressing these complicated issues.

Details

Language :
English
ISSN :
1469-5073
Volume :
98
Database :
MEDLINE
Journal :
Genetics research
Publication Type :
Editorial & Opinion
Accession number :
26763729
Full Text :
https://doi.org/10.1017/S0016672315000221