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


Young People Willing to Donate Biospecimens

A new study finds that college students are receptive to donating blood or genetic material to a biobank. Of the 250 students surveyed (undergraduate and graduate), nearly two-thirds (64%) reported they were willing to donate to a biobank. The main reasons cited for donating were altruism, to advance scientific research, and to help find cures. Interestingly, students with a family history of disease (including cancer, heart disease, high blood pressure, Alzheimer’s, diabetes and other diseases) were NOT more motivated to participate in a biobank than their peers. When asked if they were familiar with the term biobank, only one-third (36%) knew what a biobank was. The lead author of the study urges the biobank community to help educate others about biobanking, as students who were knowledgeable about biobanking were more open to participating in research.

GRDR Pilot Project

The Global Rare Disease Patient Registry and Data Repository (GRDR) published a request for information (RFI) in the Federal Registry (77 FR 7167) on February 10, 2012. The Office of Rare Diseases Research (ORDR), an organizational component of the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), is inviting patient organizations without a patient registry and those with established patient registries to be considered for participation in a two-year pilot project to establish the Global Rare Diseases Patient Registry and Data Repository (GRDR), and to submit background information about their organization for consideration by the project's selection committee. Applications must be received by March 10, 2012.

Biobank Donors Should Have a Say

Correspondence in the January 26 issue of Nature provides additional evidence that biobank donors want a say in how their samples are used. Researchers in Switzerland conducted focus groups comprised of patients, healthcare providers, researchers and members of the public to understand perceptions of human tissue use. Patients and the public desired information about how their samples would be used, and wanted to give consent for sample use. Their desire to be informed was connected to their health and being a partner in the therapeutic process. Cancer patients in particular were enthusiastic about donating samples, as this could benefit others in the future. In contrast, healthcare professionals preferred blanket consent, citing concerns that providing information about tissue use may make patients more hesitant to donate biospecimens.

International Compilation of Human Research Standards

Have you ever needed information about international standards for biomedical research involving people? The International Compilation of Human Research Standards is a great resource that lists more than 1,000 laws, regulations, and guidelines on human subjects protections from more than 100 countries. This information is presented in 6 categories: general, drugs and devices, research injury, privacy/data protection, genetics, and embryos, stem cells and cloning. Many of the listings include embedded hyperlinks to source documents.

Upcoming meetings

The NIH Biospecimens Interest Group will meet on March 27 at 1:00 PM EST in the Lipsett Amphitheater, Building 10 (NIH Clinical Center). This session will focus on Informed Consent for Pediatric Biobanking. Presentations include: 1) Risks and the Need for Consent/Permission, 2) Pediatric Biospecimens and Informed Consent when Children Reach Adulthood: Preferences and Practices, and 3) Consent from Pediatric Biospecimen Donors at the Age of Majority: A Framework for Decision-Making. The presentation will be broadcast live.

The Office of Human Research Protections (OHRP) and the National Institute of Environmental Health Sciences (NIEHS) are cosponsoring the conference, Engaging The Community for Research Success: What Scientists and IRBs Need to Know, In Raleigh, North Carolina on March 21-22, 2012. Early-bird registration has been extended to March 4.

Public Responsibility in Medicine and Research (PRIM&R) is dedicated to advancing the highest ethical standards in the conduct of research. This March, PRIM&R will offer three essential professional development programs in Boston: Institutional Review Board (IRB) 101sm, IRB Administrator 101, and IRB 201. All three courses will be held March 22-23.

ISBER (International Society for Biological and Environmental Repositories) 2012 Annual Meeting will be held May 15-18, in Vancouver, BC. Early (reduced) registration closes March 5, 2012.


Edited by Liz Horn and Sharon Terry.

Did you miss an issue?
Past registry and biorepository bulletins are archived here:

Please contact with questions or comments.

To subscribe, click here.