O Laboratório de Genética Molecular do Departamento de Genética Médica e o Programa de Pós-Graduação em Fisiopatologia Médica da Faculdade de Ciências Médicas (FCM) da Unicamp, convidam a comunidade científica para as palestras que serão apresentadas no dia 14 de maio, a partir das 14 horas, no anfiteatro da pós-graduação da Faculdade de Ciências Médicas da Unicamp:
Personal Genome Project: Creating a Global Commons of Human Data, Jason Bobe, PhDAdvancing our basic understanding of human biology and health will require extensive research on highly reidentifiable, integrated datasets composed of genomic, environmental and trait data contributed and curated by millions of volunteers around the world. To assist with this, participants in the Personal Genome Project choose to make their data public through the “open consent” framework that excludes absolute promises of privacy. Their contribution of public data and tissue samples facilitates both scientific discovery and standardization of methods. I will present the "open consent" framework, its implementation at the Harvard PGP and a growing number of sites around the world.
Então veio o que eu não poderia explicar: data, expectations and personal genomes, Misha Angrist, PhD
It is now more than two years since the first of several dozen high-quality Personal Genome Project genome sequences were made publicly available online. While the sequence data continue to accumulate exponentially, the PGP has--sometimes unwittingly--served as a series of smaller social experiments in genetic determinism, privacy, confidentiality, open access data sharing, identifiability, clinical utility, stigma, cultural norms, deliberative democracy and the many meanings of "omic" information and personal health data. I reflect on the origins of the PGP, its evolution, the challenges it poses and faces, and what the future might hold as personal genomes become more affordable (and more mundane), and the ethos of open consent is iteratively tweaked and tested in more places by more people.
About Jason Bobe
Jason Bobe serves as the Executive Director of PersonalGenomes.org and Director of Community for the Personal Genome Project based out of George Church’s lab at Harvard Medical School. The Personal Genome Project seeks to encourage the thoughtful development of personal genomics technology and practices by building frameworks for prototyping and evaluation at increasing scales. Jason is co-founder of DIYbio.org, an organization that aims to help make biology a worthwhile pursuit for citizen scientists and amateur biologists. DIYbio is fast becoming the organizational hub for amateur biologists worldwide, uniting the movement’s participants through its website, online forums, blog and local chapters.
He has also worked as a Business Development Consultant for OpenWetWare.org, as Director of Business Development at DNA Direct, and as an independent consultant. He has attended both the University of Colorado at Boulder and the Kelley School of Business at Indiana University. He is interested in how emerging biotechnologies and the web are redefining the relationships between scientific research communities, communities from the general public, and the network of actors in-between.
About Angrist Misha
Misha Angrist, PhD -Assistant Professor of the Practice, Institute for Genome Sciences & Policy
"I suspect that most of our children will have genome scans as a routine part of their health care, to say nothing of their social lives. I want to understand what that world might look like."
Misha Angrist is interested in the intersection of genomes and society, especially as it is manifest in the nascent personal genomics movement. He is investigating personal genomics from technological, commercial and individual perspectives. His courseload includes Science in the Media; he has a particular interest in narrative nonfiction devoted to genomics and other life sciences. Angrist holds a PhD in genetics from Case Western Reserve University, an MS in genetic counseling from the University of Cincinnati, and an MFA from the Bennington Writing Seminars.Informações: icendes@fcm.unicamp.br ou silva@fcm.unicamp.br. Entrada franca.