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'BRIF IN ACCESS & SHARING POLICIES ' SUBGROUP: reports from teleconferences.

The attached files are highlights of “brainstorming discussions” of the 'BRIF Access & Sharing policies' subgroup, carried out by telephone conference calls:

- N°1: 8th of July, 2011.

-N°2: 24th of october, 2011

Your comments are very welcome below or by mail to mdeschenes@p3g.org

AttachmentSize
Highlights_July8_SharingPolicyGroup.doc.doc29.5 KB
Highlights BRIF Teleconference 24 oct 2011.docx22.13 KB

Comments

Comments

#1 Hi, One element which could

Hi,
One element which could be identified as help support to push the use of biological resource is public catalogues of samples or collections. Through them, the users could know which biobanks could share which type of biological resources
JH di Donato

#2 HI, glad to be here. I think

HI, glad to be here. I think that a cpmprehensive policy to anhance sharing comprises elements of public awarness. In fact often a decisive element of help or limit is the informed consent. In a comparative analisis of different biorepositories sharing was often hampered by a consent modulated in a restrictive way without possibilities to go back to participants.

#3 BRIF Access & Sharing

BRIF Access & Sharing group Preface: My comments are from the perspective of ‘tumor and disease’ focused biobanks and may or may not be as applicable to other categories and are for biobanks whose design is to accrue and store for future research (as opposed to biobanks that accrue for specified studies) I think the working group table (Oct 24th doc, access related impact factors) may have missed an important access factor. The nature of the coding design has a significant influence on the access to downstream/secondary data and so the impact of the biobank. A general practice model is to secure consent from participants on the basis that the biobank commits to certain governance rules, including a) all materials are coded in the biobank, b) only coded materials will be released to research users and c) all research will be reviewed by an ethics board (ie REB in Canada). In keeping with this the typical model is for all internal materials (biospecimens and data) to have an ‘internal code’ that is applied at the point of accrual. This code may or may not allow linkage to the donor. Released materials usually also have a code (also known as bank ‘release code’ or identifier) that permits the bank (under the authority of the Bank Director) to link the data to the sample and if linkable to the donor, to trace their origins. In either case ‘release codes’ do not contain any data which can be interpreted to identify the donor. But the release code used for data and samples is a public identifier. Depending on the circumstances, the bank may be designed to make the release code different from the internal code used within the bank, and unique for each case used for each study release. The bank design may also make the release code on each ‘case’ released to more than one study, the same for each study receiving the same materials or different (ie each case may be released to several studies but the release code used for each study may be common to all studies or different). The former strategy means that researchers cannot cross reference cases and data to conduct secondary research without involvement or ‘reaccess’ to the bank and is usually chosen where the nature of the research and the data released raises above minimal level the risk that cross referencing might compromise individual identities or the scope of the original consent. The latter strategy means that research results can be shared more effectively and the value of the research data amplified, but also that the second and subsequent research layers based on the first layer of research data that is cross referenced, do not need to interact with or reference or recognize the impact of the biobank. Peter Watson
G2P Knowledge Centre is part of GEN2PHEN and funded by the Health Thematic Area of the Cooperation Programme of the European Commission within the VII Framework Programme for Research and Technological Development.

© GEN2PHEN 2011