On her blog Kerstin Forsberg reports on the many opinions expressed relating to de-identification (anonymization) and patient consent for data sharing. One patient advocate at the conference stated “No-one ever asks if you want to be de-identified or not”.
For the individuals who do not mind all their data to be entirely public (i.e. not fully de-identified) projects like the Personal Genomes Project is an option to contribute all your genomic data and medical data for open access and public use without any promises of privacy. Since last week the Personal Genomes project launched in the UK, and they have put a call out for 100,000 volunteers to donate their data: personalgenomes.org.uk
The options today are all-or-nothing both with respect to anonymization and data sharing. We want to provide an alternative to meet the needs of both patients and researchers: DNAdigest is developing a platform to apply a patented mechanism for data sharing allowing variable levels of anonymization. Our mission is to enable the widest possible reuse of genomic data within the consent given by the individual donating the data.