Genetic Alliance BioBank participated in The Experts Speak, an expert commentary on the biggest challenges and opportunities for biorepositories in the next 3-5 years. Creating sustainable models that support open access to well-annotated collections and address participant privacy concerns are vital for continued advancement of the biobanking field. We must find ways to build shared infrastructure systems, essentially uberregistries and biobanks, to put as much information and resources as possible into the precompetitive space.
The informed consent process typically relies heavily on information provided to potential participants in a written consent form. A new study examines changes in consent forms over time. Two trends were notable: greater consistency in the description of risks, and an increase in the length of consent forms (by an average of 1.5 pages per decade). Other studies have shown that the longer the consent form, the less likely participants are to read it. These findings suggest that innovative approaches are needed in our current informed consent process.
OHRP (Office for Human Research Protections) has posted educational videos on the HHS YouTube channel. These are great resources for those desiring to learn more about Institutional Review Boards (IRBs) and the informed consent process.
Biobank and Registry Essentials: a Q&A for Advocacy Organizations
Genetic Alliance is hosting an interactive question and answer session about registries and biobanks from the advocacy organization's perspective, September 1, 2010 at noon EST. This is a unique webinar format where the majority of time will be spent answering your questions.
The NIH Biospecimens Interest Group will meet on September 16 at 2:00 PM EST in the Lipsett Amphitheater, Building 10 (NIH Clinical Center). James O'Leary, Genetic Alliance's Chief Innovation Officer, will give a presentation about Genetic Alliance BioBank.
Edited by Liz Horn, Ley Lacbawan, and Sharon Terry.