Upcoming Genetic Alliance Events
Marketing your Biobank Collection Effectively
October 11, 2012, 12 noon – 1 pm EDT
If you build it, they will come… This strategy may have worked for Ray Kinsella in Field of Dreams, but it will not produce a home run for biobank managers. Many organizations spend large amounts of time, effort, and resources building their sample collections, and limited resources are spent marketing these collections to researchers. Science will not advance if biospecimen collections sit unused in the freezer. But how do you get researchers to be aware of and use your biosamples? Join us, as we ask three experts to share their experiences about marketing their biobank collection and making samples available to researchers. Each panelist is involved with a different type of biobank (e.g. academic, government, and advocacy-driven) and offers a unique perspective about making their collection available.
Moderator: Liz Horn, PhD, MBI
Director, Genetic Alliance Registry & Biobank
Marianna Bledsoe, MA
Senior Program Manager for Biorepositories and Biobanking
Department of Veterans Affairs
Kathy Sexton, MBA
As. Director, Tissue Collection and Banking Facility
University of Alabama at Birmingham
Suzanne Vernon, PhD
The CFIDS Association of America
Webinar Series: What about Privacy and Progress in Whole Genome Sequencing?
The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. This year-long series will use the report structure as the basis for discussion. We’ll explore each recommendation, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy.
Webinar Series: Registries for All
Registries for All (Reg4ALL) is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how confortable they are with sharing that information. Find out how Reg4ALL works – and how to make it work for you – with the Genetic Alliance webinar series.
Powerful Patient Data: Genomics and Family Health History in Health IT
May 30-31 2013, Salt Lake City, Utah
Family health history and genetic/genomic information face similar barriers to use in patient care. Collection of this information can be sensitive and often impacts a patient's family members. Even when the information is collected, the data is rarely stored in a way that allows it to be used to its full potential. And yet, this information has significant potential for use in screening and diagnosis for an individual and their family. Genetic Alliance and Intermountain Healthcare are planning a summit with the goal of ensuring that this important information can be accessed and activated within the electronic medical record to drive better patient care.