Genomics

Agenda for Meeting Ten: August 1-2, 2012 in Washington, DC

Renaissance Hotel, Downtown DC
999 9th Street NW, Washington, DC 20001

Wednesday, August 1

9:00 – 9:15 a.m.  Welcome and Opening Remarks

Amy Gutmann, Ph.D.
Commission Chair

James Wagner, Ph.D.
Commission Vice-Chair

9:15 – 10:00 a.m.  Session 1: How Technology is Changing Views of Privacy

TRANSCRIPT, Meeting 9, Session 8

DR. WAGNER:  And if you were present for the prior roundtable, you're prepared for the genre of question we open up with.  And as the ‑‑ as our Commission thinks about how we want to talk about privacy and access to genomic data, or for that matter how it is processes of collection and management, if you will, have ‑‑ we'd like you to give some thought to one thing you would certainly expect to read there.  A particular aspect of this that you would hope we would address.

          Greg, you made the mistake of nodding.  So may I ask you perhaps to go first?

Date

Thu, 05/17/2012

TRANSCRIPT, Meeting 9, Session 7

DR. WAGNER:  Greg Biggers and Leonard D'Avolio, if you would join us up here?

                        DR. GUTMANN:  Thank you all.  I think members of the Commission will be soon seated.  So I'll start with my introduction.

                        Continuing on genomic privacy and data access, Greg Biggers, welcome, serves on the Council for Genetic Alliance, which is a leading non‑profit health advocacy organization committed to transforming health through genetics.  And Mr. Biggers is representing Council for Genetic Alliance here today.

Date

Thu, 05/17/2012

TRANSCRIPT, Meeting 9, Session 6

SESSION 6: THEORY AND PRACTICE OF A RIGHT TO PRIVACY

DR. WAGNER: We're switching gears to an entirely different project.  And that is the work we've been doing on privacy and access to whole genome sequence data.  We began this last year, had another effort, continued our deliberations in San Francisco in February, and today we're going to revisit the topic of privacy and start a discussion about the right to privacy in both theory and practice.

Date

Thu, 05/17/2012

TRANSCRIPT, Meeting 8 Session 2

DR. GUTMANN:  So, we're off to a great start, and now, we're turning our attention to discussing directly, questions of individual privacy and the public good, and I emphasize both, individual privacy and the public good, as they relate to whole genome sequencing, and we've already had hints of this issue in our earlier session.

Date

Thu, 02/02/2012

TRANSCRIPT, Meeting 8 Session 5

            DR. GUTMANN:  So, thank you all, first, for your presentations and second, for participating in a roundtable, and square roundtable, yes, and if we have -- do we have Dan's slide about attitudes towards privacy that we could put up, so, why don't we -- because we had asked Dan about what they found.  So, Dan, why don't you just say a few -- just explain what you found, just because I'm going to ask a question about privacy to everybody.

            DR. MASYS:  Okay.

            DR. GUTMANN:  Go ahead.

Date

Thu, 02/02/2012

TRANSCRIPT, Meeting 8 Session 4

DR. GUTMANN:  Sorry, I turned it off. We're now going to switch gears to focus on law enforcement use and access to genetic information, and to do so I first would like to welcome Melissa Mourges.  Thank you very much.

            Ms. Mourges is an Assistant District Attorney and the Chief of the Forensic Sciences Cold Case Unit of the New York County DA's Office.

Date

Thu, 02/02/2012

TRANSCRIPT, Meeting 8 Session 8

DR. WAGNER:  Let's go ahead and collect some thoughts for a final session here.  Christine.  I got you.  Actually I shouldn't have been yelling at you because I don't see Dan or Nelson here.   Oh, we got Nelson.  Why don't we - Dan is so wonderfully perceptive.  He can jump in halfway through this and he is good like that, so let's go ahead and get started.

            Oh, here's Dan.  Perfect, perfect timing.  Perfect timing.

Date

Fri, 02/03/2012

TRANSCRIPT, Meeting 8 Session 3

                      

            DR. WAGNER:  Well, good afternoon.  Welcome back, to our guests.  This Session 3 is also on the privacy issues, control, access and human genome sequence data.

            I remind the folks joining us, that if you develop questions during these presentations, or as we are asking questions, the staff can help you locate a card to get that question up to the front, and we're very happy to interject your thoughts and comments.  This is a learning period for the Commission.

Date

Thu, 02/02/2012

TRANSCRIPT, Meeting 8 Session 1

            DR. WAGNER:  I think we can move right into our first session.

            We have the privilege of hearing from these three, who I promise to be very interesting speakers, going to talk not only about personal experiences with whole genome sequencing and its effect on families, but also, we are going to receive this morning, a brief update on the current state of human genome sequencing, and we hope all will discuss some of the ethical issues that are facing us.

Date

Thu, 02/02/2012

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