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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
28 October 2011 Issue #20
Code of Conduct for Genomic Research

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.

Read the article.

Research Participants as Partners

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.

Reciprocity in Biobank Research
An article in the November 2011 issue of Nature Reviews Genetics discusses the necessity of a biobanking system with reciprocity as the core principle. In order to generate necessary public participation, the authors cite four influencing factors: (1) public understanding of biobanks, (2) trust in the institutions and scientists running them, (3) considerations of benefit sharing, and (4) data security and privacy. These factors should be considered together, as addressing one without the others may lead to problems in the future. The authors suggest the best way to address all these factors is through a mutual partnership between the investigator and participant. The specific approach to these relationships may vary between cultures, but it is crucial the public understands that participating in biobank research includes benefits for both parties.

International Interoperability for Biobank Samples
In a new paper, researchers from the Institute of Clinical Chemistry and Laboratory Diagnostics of Jena University Hospital in Germany examined aspects of international collaboration between biobanks. The authors identified two defining features of international exchange. First, it is difficult to define general rules for international sharing of biospecimens due to differing legal, ethical, and political frameworks among countries. To address this issue, stakeholders should clarify any uncertainty through bilateral contracts. Second, biospecimen quality is an issue among international collaborations. Since biobank partners expect that the biospecimens they receive are of a certain quality, the authors recommend the use of contractual warranties specific to the type and quality of biospecimen that they expect to obtain.

Upcoming Meetings

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.