Data access requests are increasing, as scientists realize the benefits of data sharing, such as advancing knowledge and respecting the contributions of research participants. In an effort to address the issue of data sharing in the context of international genomic research, scientists from the Public Population Project in Genomics (P3G), the European Network for Genetic and Genomic Epidemiology (ENGAGE), and the Centre for Health, Law and Emerging Technologies (HeLEX), propose seven different data sharing principles and a preliminary Code of Conduct. The principles address issues of quality, accessibility, responsibility, security, transparency, accountability, and integrity while taking care to balance the interests, rights, and duties of the various stakeholders involved in collaborative efforts.
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In a commentary in the October 20, 2011 issue of Nature, Dr. Krishanu Saha and Dr. J. Benjamin Hurlbut highlight the importance of researcher-participant partnerships in biobank research. Public trust in biospecimen research has eroded following several publicized events, and the authors point to better communication as the solution. HHS’ (Department of Health and Human Services) proposed changes to “the Common Rule” are discussed, including blanket consent for future research with biospecimens and data, which could result in decreased participation. Finally, the authors explore innovative ways to connect participants to research, including advocacy-initiated biobanks, and companies Patients Like Me and 23andMe. Genetic Alliance Registry & BioBank is mentioned as an example of an advocacy-initiated biobank.
ISBER (International Society for Biological and Environmental Repositories) is now accepting abstracts for its 2012 Annual Meeting, May 15-18, in Vancouver, BC. The abstract submission deadline is December 15, 2011.
5th Annual Biospecimen Research Network (BRN) Symposium is now accepting abstracts for its 2012 meeting, February 22-23, in Bethesda, MD. The abstract submission deadline is January 11, 2012.