meetings

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?

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.

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.

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.

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.

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.

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.

DR. WAGNER:  And Drs. Anderson and Klein, if you could join us?

                        Welcome to you both.  This session, as Amy said, focuses on pediatric research and practice, benefits as well as some of the practical challenges that it poses, and we will hear first from Dr. Michael Anderson here on behalf of the American Academy of Pediatrics, Vice President and Chief Medical Officer for University Hospital's Case Medical Center, and Associate Professor of Pediatrics at Case Western Reserve School of Medicine in Cleveland.

DR. GUTMANN:  Thank you.  Could I invite our first presenters up to the table, please, and thank you all for being here.  I thank you, before we get to ask you the hard questions, which you then may not thank us for being here.

                        We're going to begin our day with the discussion of Special Considerations for Research on Children because that's the fundamental issue that leads us to be dealing with this charge and we have with us Dr. David DeGrazia, who's a Professor of Philosophy at George Washington University.  Welcome, David.

DR. GUTMANN:  Good morning, everybody.  I'm Amy Gutmann.  I'm President of the University of Pennsylvania and I have the privilege of serving as Chair of the Presidential Commission for the Study of Bioethical Issues, and I welcome you all here this morning.

                        On behalf of myself and our Vice‑Chair Jim Wagner, who will say a few words in a minute, I would like to welcome you.  This is our ninth meeting of the Presidential Commission and we have some important work to do.