In many countries, genome sequencing technology is now starting to become available in the clinic, where it helps to diagnose rare Mendelian diseases and contributes to personalized cancer therapy. The analysis of personal genomes also creates unprecedented opportunities for predictive health counseling, ancestry research, forensics, and many more applications that are just starting to emerge.
Despite the strong impact that personal genome sequencing is likely to have in healthcare and beyond, public discussions on the societal and ethical aspects of this technology are only just beginning in most countries. Genom Austria thus aims to create a forum for such discussions at the interface of science and society.
To make personal genome sequencing concrete and tangible for people in Austria, the project will provide interested volunteers with the opportunity to have their genomes sequenced with state‐of‐the‐art technology and to share the data with the public.
Participation is entirely voluntary and restricted to individuals who demonstrate adequate understanding of the implications of making their personal genomes publicly available. In its initial phase in 2015, Genom Austria will sequence the personal genomes of 20 selected volunteers who have consented to publish their genomes and related information openly and freely on the Internet.
Genom Austria will also contribute to science education by organizing a school project and open science workshops. Furthermore, it creates a forum for interdisciplinary dialog among experts and the general public in areas such as biology, medicine, ethics, sociology, psychology, history, and the arts.
Internationally, Genom Austria builds upon the pioneering work of the Personal Genome Project at Harvard, which was initiated by George Church in 2005 and currently has over 3,000 participants. Genom Austria is a member of the Global Network of Personal Genome Projects. It also collaborates with other member sites in the USA, Canada, and the UK, in order to exchange best practices in personal genomics, open science, participatory research, and engagement with society.
Genom Austria is physically based at the CeMM Research Center for Molecular Medicine of the Austrian Academy of Sciences in Vienna and jointly run with the Medical University of Vienna.
PersonalGenomes.org and the Global Network of Personal Genome Projects – brief profile
PersonalGenomes.org is a charitable organization working to generate, aggregate and interpret human biological and trait data on an unprecedented scale. Our mission is to make a wide spectrum of data about humans accessible to increase biological literacy and improve human health. PersonalGenomes.org’s programs are informed by values encouraging greater transparency and collaboration between researchers and the public. The organization coordinates the Global Network of Personal Genome Projects, with member sites at leading institutions in four countries. Other groundbreaking programs include Open Humans and the annual Genomes, Environments and Traits (GET) Conference. For further information, please visit: www.personalgenomes.org.
CeMM Research Center for Molecular Medicine of the Austrian Academy of Sciences – brief profile
CeMM is an international, independent, and interdisciplinary research institute for molecular medicine. “From the clinic for the clinic” – CeMM is guided by medical needs, and it integrates fundamental research with clinical expertise in order to develop innovative diagnostic and therapeutic approaches. Its research projects focus on cancer as well as on inflammatory and immunological disorders. For further information, please visit www.cemm.oeaw.ac.at.
Medical University of Vienna (MedUni Wien) – brief profile
The Medical University of Vienna is one of the longest‐established medical training and research institutions in Europe. With almost 7,500 students, it is today the largest medical training body in the German‐speaking world. With its 27 university hospitals, 12 medical research centers and many highly specialized laboratories, it is also among the most important cutting‐edge biomedical research centers in Europe. For further information, please visit www.meduniwien.ac.at.