transcripts

Transcript, Meeting 10, Session 4

DR. WAGNER:  But don't go anywhere. No, please don't go anywhere.  In fact, what we want to do is invite back now all of our other morning's guests and speakers, if they would join us.  And I think we've got name tags up here to remind you who you are.

Date

Wed, 08/01/2012

Transcript, Meeting 10, Session 3

DR. GUTMANN:  Commission members, please be seated.  Welcome back, everybody.  We are about to welcome Dr. Bartha Knoppers.  And Dr. Knoppers will speak with us about consent and return of research results.

                             Dr. Knoppers is the director of the Center of Genomics and Policy at McGill University in Canada.  She has served as the chair of the International Ethics Committee of the Human Genome Organization and as a member of the UNESCO International Bioethics Committee which drafted the Universal Declaration on the Human Genome and Human Rights. 

Date

Wed, 08/01/2012

Transcript, Meeting 10, Session 7

DR. GUTMANN:  Okay.  We are going to jump right into our first session.

                             So, yesterday we began with some of our recommendations and had a very, I thought, productive discussion of them.  Today we are going to continue with them.

                             They clump into two big categories.  One is consent to hold genome sequencing and to the possible findings and how they will be treated, and the other is oversight of them.

Date

Thu, 08/02/2012

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, Distinguished Speaker

DR. GUTMANN:  So it is my honor and privilege and pleasure to welcome the 21st Secretary of Health and Human Services, the Honorable Kathleen Sebelius.  I want to say a few words about the Secretary before she says a few words to us.

          In each phase of her career, Kathleen Sebelius has embodied the motto of the Sunflower State, leading Americans to the stars through difficulties.  The difficulties have been tremendously numerous and diverse.  Time and again she's triumphed to benefit citizens across this country.

Date

Thu, 05/17/2012

TRANSCRIPT, Meeting 9, Session 3

DR. GUTMANN:  So we will hear now from Dr. John Parker.  Welcome.

          John Parker is Chair of the National Biodefense Science Board.  Dr. Parker is also the Senior Vice President of Corporate Development, Chief Medical Officer, Chairman of the Institutional Review Board, and Technical Fellow at Science Applications International Corporation.

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

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 9, Session 5

DR. GUTMANN:  We're missing Lisa and John, so we'll wait a minute.  Okay.  I assume ‑‑ do we know where two of our panelists are?  Well, we will just ‑‑ we'll get started.

Date

Thu, 05/17/2012

TRANSCRIPT, Meeting 9, Session 4

DR. WAGNER:  Will Professor Hodge and Doctors Taylor and Kaplowitz please come forward?

                        As they're grabbing their seats, this next section is one where we'll discuss special ethical considerations that arise in medical countermeasure research and use.

                        Speaking to us first is Dr. Lisa Kaplowitz.  Welcome.

Date

Thu, 05/17/2012

Pages

Subscribe to RSS - transcripts