... and preferences to genomic research, including international data sharing and biobanking. Methods: Individuals with CP and their family members were invited to participate in the web-based survey via email (NSW/ACT CP Register) or via posts on social media by Cerebral Palsy Alliance, CP Research Network, and CP...

...Ashli A. Owen-Smith; Musu M. Sesay; Frances L. Lynch; Maria Massolo; Hilda Cerros; Lisa A. Croen Introduction: Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks...

... participation in biobanking among ethnic and racial minorities. The purpose of this study was to use qualitative methods to identify factors that may influence Mexican-American individuals' willingness to participate in biobanking. Methods: We conducted 15 focus groups in three Texas cities with Mexican...

...Christine Critchley; Dianne Nicol; Margaret Otlowski Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party...

...Stephanie Solomon; Ann Mongoven Biobank donors and biobank governance face a conceptual challenge akin to clinical patients and their designated surrogate decision-makers, the necessity of making decisions and policies now that must be implemented under future unknown circumstances. We propose...

...Jasmine A. McDonald; Susan Vadaparampil; Deborah Bowen; Gayenell Magwood; Jihad S. Obeid; Melanie Jefferson; Richard Drake; Mulugeta Gebregziabher; Chanita Hughes Halbert Background/Aims: Despite the investments being made to develop biobanks, African Americans are under-represented in genomic...

... to privacy and consent issues. Biobanking Bloodspots Newborn screening Public policy Storage of residual newborn screening samples In the United States, newborn screening (NBS) programs are state mandated programs that screen for 30 or more inherited conditions. However, states have varying...

... Island in Ontario (42° north, parallel to Macon in Burgundy). The 2006 population was 31.6 million [ 1 ], mainly concentrated in urban areas around the Great Lakes and the St Lawrence River. About 90% of the population live within 160 km of the U.S. border. Biobanking Birth defects surveillance...