12 May 2016
US Vice President Joe Biden has urged for a culture change in favour of sharing genomic data along with the need for common standards, in order for advances to be made in preventing, detecting and treating cancer.
In its open letter, members of the advisory committee to the International Nucleotide Sequence Database Collaboration (INSDC) reminded the research community of the importance of depositing complete DNA-sequence data into their databases upon publication of research results. The INSDC initiative was established to promote the collection and dissemination of DNA and RNA sequence databases.
Acknowledging that access to its databases, which includes DDBJ, ENA, and GenBank, is free and unrestricted, the advisory committee recommended that for papers containing sequence data from human subjects where unrestricted data release may not be possible, journal editors should insist on data sharing through other depositories that are not part of the INSDC.
PHG Foundation collaborated with the Association for Clinical Genetic Science in a report highlighting the need for responsible data sharing across clinical genetics services to improve patient safety and service quality in the UK. Among the report’s recommendations was the need to build trust by being transparent about the purpose, risks, benefits and safeguards involved in data sharing, and the call for standardised operational procedures for data sharing.