SESSION 3: CONSENT AND RETURN OF FINDINGS
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.
SESSION 7: MEMBER DISCUSSION OF RECOMMENDATIONS
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.
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.
SESSION 3: THE NATIONAL BIODEFENSE SCIENCE BOARD REPORT
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.
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.
SESSION 5: MEDICAL COUNTERMEASURE ROUNDTABLE
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.
SESSION 4: SPECIAL CONSIDERATIONS FOR MEDICAL COUNTERMEASURE RESEARCH AND USE
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.
SESSION 2: PRACTICAL CHALLENGES POSED BY PEDIATRIC RESEARCH
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.
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