Personal Genome Project


A Revolution in Data Gathering: John Wilbanks

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Guest:

John Wilbanks, Senior Fellow , The Kauffman Foundation Bio and Contact Info

Listen (7:31) Disconnect between informed consent and digital technology

Listen (9:26) Consent to Research Project

Listen (5:59) Who will be the early volunteers to share their data?

Listen (11:46) Access2Research petition at White House-now what?

Listen (3:59) Can you describe the nature of the legal threats you've received?

Listen (3:33) Would you donate your child's data to research?

Listen (4:23) Data gathering undergoing a revolution

"I like making it easier to share things," says John Wilbanks, a senior fellow at the Kauffman Foundation. Also a member of the Board of Directors for Sage Bionetworks, Wilbanks has been involved in numerous projects having to do with opening up important content and data. Now he runs the Consent to Research Project where he is designing systems that allow people to donate their research to data. Wilbanks discusses the disconnect that is emerging between informed consent and the realities of the digital revolution. In this comprehensive interview he talks about the Access2Research petition he recently spearheaded to extend the NIH's open access policy to the other federal agencies.

Why does John like making it easier to share things? Hear about his past and find out his thoughts on data gathering in the future.

Listen to Wilbanks' TED talk

Misha Angrist: "Here is a Human Being"

Guest:

Misha Angrist, Ph D, MFA, Author, "Here is a Human Being: At the Dawn of Personal Genomics"Bio and Contact Info

Listen (3:44) Misha 1: PGP a "microcosm" of our lives

Listen (7:03) Misha 2: Why take part in the PGP?

Listen (2:46) Misha 3: The Role of DTC Companies

Listen (1:15) Misha 4: Why not tell daughters about their risk?

Listen (2:13) Misha 5: "Consenting to uncertainty"

Listen (6:53) Misha 6: Experience with Francis Collins

Listen (0;57) Misha 7: X Prize

Listen (1:14) Misha 8: Impression of Jim Watson

Listen (5:05) Misha 9: George Church "the hero of the book"

Listen (2:19) Misha 10: Finally seeing his genome

Listen (3:32) Misha 11: How far along is the PGP?

Listen (4:11) Misha 12: 80 billion bases is a "metric shitload of data"

Listen (2:26) Misha 13 Detractors to the PGP

Listen (1:35) Misha 14: Genomic Resources

Listen (3:05) Misha 15: Sage Bionetworks

Listen (3:30) Misha 16: Is the PGP for everyone

Known as "PGP4," Misha was the fourth member of the original 10 to volunteer to the Personal Genome Project begun by Dr. George Church at Harvard. He has had his genome sequenced and made publicly available. Misha chronicles his experience with the PGP in his recent book, Here is a Human Being: At the dawn of Personal Genomics. Anyone can go to personalgenomes.org and see that Misha is severely allergic to pollen, ragweed and cats. He takes daily Udo’s Choice Adult Blend of Probiotic, Omega 3 Fatty Acids through fish oil, and Lexapro. He is a white, male with A- blood type, is right hand dominant, and wears prescription glasses for near and farsighted vision. One can also find any number of unique genetic variants that Misha carries, including A481T and R305W, variants of the OCA2, an albinism gene. Misha, however, is not albino. The book also tracks the race to the fastest, cheapest mode of next generation sequencing. Dr. Angrist is an assistant Professor at the Duke University Institute for Genome Sciences and Policy. We are happy to have him to mendelspod to talk about his book and about the issues around the intersection of genomes and society.

George Church Talks Personalized Medicine and Synthetic Biology

This podcast originally aired on May 25th, 2011

Sponsored by: BioConference Live

Guest: Church George, PhD, Professor of Genetics, Harvard Medical School and Professor of Health Sciences & Technology, Harvard and MIT. Bio and Contact Info

Part I-Personalized MedicineChurch George Listen (20:24)

Part II-Synthetic BiologyChurch George Listen (19:04)

Part III-Personal AnecdotesChurch George Listen (06:54)

Our guest for the hour is Dr. George Church from Harvard. Dr. Church’s accomplishments are legendary among scientists in his field and beyond. His Ph.D. from Harvard in biochemistry and molecular biology with Wally Gilbert included the first direct genomic sequencing method in 1984. In 1994, the technology transfer of automated sequencing and software to Genome Therapeutics Corp. resulted in the first commercial genome sequence (the human pathogen, H. pylori). He was then involved in initiating the Human Genome Project as a Research Scientist at Biogen Inc. In 2006 he initiated the Personal Genome Project with the aim of advancing the field of Personalized Medicine. He invented the broadly-applied concepts of molecular multiplexing and tags, homologous recombination methods, and array DNA synthesizers. He has served in advisory roles for 12 journals and 5 granting agencies and also been involved in 22 private companies including LS9-which focuses on bio-petroleum, and Knome who provides full human genome sequencing. Current research focuses on integrating biosystems-modeling with personal genomics and synthetic biology.



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