From: Sharon Terry [mailto:[log in to unmask]] Sent: Sunday, March 18, 2012 7:28 PM Subject: Three announcements: Call for Personal narratives of genome-scale testing, link to webcast of Genetic Testing Summit, and reporter wishes to speak to people who haven't had their genetic data returned to them but would like it Importance: High 1) Call for Personal narratives of genome-scale testing We are looking for individuals who may be interested in writing about their experiences with receiving results from genome-scale testing. By 'genome-scale testing' we mean testing, in either a clinical or research setting, that produces a large amount of information about a person's genetic makeup (such as whole genome or whole exome sequencing, array-comparative genomic hybridization, or a comprehensive single nucleotide polymorphism profile). We are interested in the experiences-positive or negative-of (i) adults who have undergone genome-scale testing for assistance with the diagnosis or management of a clinical condition, (ii) parents whose minor child has undergone such testing, and (iii) volunteers who have undergone genome-scale testing under a research protocol. Attached is a flyer with more information, which we would very much appreciate your passing along to individuals in any of the three groups outlined above. Please also feel free to forward this message to any professional colleagues who may know of individuals in one of these groups. Please follow directions on the attached flyer to participate. Please note that authors of the stories are named, but direct identifiers are eliminated from within the stories (e.g., no programs, investigators, or physicians will be named in stories). See "Protecting the Privacy of Third Parties" at this link: http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html ------------ 2) Genetic Testing Summit - the webcast from this event is archived on YouTube and is broken up by talks and panels - you can directly access the playlist here: http://www.youtube.com/playlist?list=PL8E06AA3772449093&feature=plcp If you want access the original agenda, the UnitedHeath Group's paper and other original information you can click here: http://geneticalliance.org/genetic_testing_summit ------------ 3) Request from a reporter - if you have received any kind of genetic or genomic testing and have not received your results, but would like to, and would like to share your story with a reporter from a major news outlet, please email me: [log in to unmask]<mailto:[log in to unmask]> =========================== Sharon F. Terry | President and CEO Genetic Alliance | 4301 Connecticut Avenue, NW | Suite 404 | Washington, DC 20008 | Phone: 202.966.5557 x 201 | Fax: 202.966.8553 [log in to unmask]<mailto:[log in to unmask]>| http://www.geneticalliance.org<http://www.geneticalliance.org/> Ashoka Fellow: http://usa.ashoka.org/fellow/sharon-terry Double your money! Genetic Alliance has a challenge for you! Donate to our matching campaign: http://www.geneticalliance.org/meet-the-challenge