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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
24 August 2012 Issue #30


The Role of Community in Biobanking

A recent study explored public opinion of biobanking in the Alaska Native community. An excerpt of the study was published in Project Muse. Using a community-based participatory research approach, investigators examined underrepresentation of minority community members in research, and the lack of knowledge about the health disparities in these communities. After prior community-stigmatizing research, Alaska Native community member views of research were negative and affected future participation in research. There is a great need to address these issues with community leaders. Recommendations include increasing the role of community members in research, and developing partnerships between community members and academia to educate current research teams on past research performed within the community.

Returning Research Results and Incidental Findings

The Public Population Project in Genomics (P3G) published a Policy Statement concerning the return of research results (IRRs) and incidental findings (IFs) to participants. The statement suggests that researchers, in collaboration with their IRB or Ethics Review Committee, should consider returning IRRs and IFs to participants if the following criteria are met: 1) the participant has consented thereto in the initial consent form or at a later time; 2) the findings are analytically valid (i.e., confirmed independently); 3) they reveal a significant risk of a serious health condition; and, 4) they are actionable. Additional scenarios for returning IRRs and IFs exist when there is likely therapeutic benefit.

New ISBER Resources

The International Society for Biological and Environmental Repositories (ISBER) has two new resources. The Biospecimen Science Literature Compilation is a rich resource of published literature organized by category with hyperlinks to source documents, including guidelines and PubMed abstracts. ISBER has also created SPRECALC, a new excel tool that enables the automatic calculation of the Standard PREanalytical Code (SPREC) for solid and fluid biospecimens.

Ethical Considerations in Rare Disease Research

The Angelman Syndrome Foundation hosted dinner debates at their Scientific Symposium in June. Six renowned panelists discussed ethical considerations in rare disease research. Discussions included: how study participants can be assured that researchers are conducting clinical trials ethically, obligations of researchers in providing complete transparency about pre-clinical data, and ethical implications of assessing development and comprehension of individuals with neurodevelopmental disorders. View videos of the panel discussions.

Natural History Study Resources

Well-designed and conducted natural history studies are essential for the development and approval of new therapies. In May, NCATS held a workshop on Natural History Studies of Rare Diseases: Meeting the Needs of Drug Development and Research. The workshop summary is now available, along with videos of the event. Natural history studies are also highlighted in our Week 73 and Week 74, and Week 85 biobank tips.


Edited by Nichole Hansen, Wenyi Wu, Liz Horn, and Sharon Terry

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