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Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection

P3G Consortium   Church, G   Heeney, C   et al

PLoS Genetics   5 (10) 1000665

DOI: 10.1371/journal.pgen.1000665

October 2009

http://www.research.ed.ac.uk/portal/en/publications/public-access-to-genomewide-data(5c44ba5a-4f5f-4b23-a69d-d55693ae44ce).html

In 2003, a consortium of scientists working largely in public institutions triumphed over Celera in the race to map the human genome. A willingness to make their data freely available on the Web played a part in this achievement. Subsequently, this approach to data sharing has become a norm in genomic research and often a requirement of funding. However, genomic information is not restricted to the research community. There are now private companies (for example, 23andMe) collecting sequence data and related information. The real problem for genomic research is not that the information is available within the scientific research community, but that genomic sequence information is accessible to people outside of this community, who are not subject to the same safeguards, oversight, and professional codes of conduct. This has significant implications for our ability to protect the privacy of research participants.